ethnography and case study similarities and differences

Case Study vs. Ethnography

What's the difference.

Case study and ethnography are both research methods used in social sciences to gain a deeper understanding of a particular phenomenon or group of people. However, they differ in their approach and focus. A case study typically involves an in-depth examination of a single individual, group, or event, aiming to provide a detailed analysis of a specific situation. On the other hand, ethnography involves immersing oneself in a particular culture or community over an extended period, observing and interacting with its members to understand their beliefs, behaviors, and social dynamics. While case studies provide detailed insights into specific cases, ethnography offers a broader understanding of the cultural context and social interactions within a community.

Further Detail

Introduction.

Case study and ethnography are two research methods commonly used in social sciences and other fields to gain a deeper understanding of a particular phenomenon or group of people. While both methods aim to provide rich and detailed insights, they differ in their approach, scope, and data collection techniques. In this article, we will explore the attributes of case study and ethnography, highlighting their similarities and differences.

Definition and Purpose

Case study is a research method that involves an in-depth examination of a specific individual, group, or event. It aims to provide a comprehensive analysis of a particular case, often focusing on a unique or rare occurrence. On the other hand, ethnography is a qualitative research method that involves immersing the researcher in the natural environment of a group or community to observe and understand their culture, behaviors, and social interactions.

Scope and Generalizability

One key difference between case study and ethnography lies in their scope and generalizability. Case studies are typically more focused and specific, aiming to provide detailed insights into a particular case or situation. The findings of a case study may not be easily generalized to a larger population due to the uniqueness of the case being studied.

On the other hand, ethnography aims to capture the broader cultural and social dynamics of a group or community. By immersing themselves in the natural setting, ethnographers can observe and document the behaviors, beliefs, and practices of the group. Ethnographic research often seeks to uncover patterns and themes that may be applicable to similar groups or communities, allowing for a higher level of generalizability.

Data Collection

Another important aspect to consider when comparing case study and ethnography is their data collection techniques. In case studies, researchers often rely on multiple sources of data, including interviews, surveys, observations, and document analysis. These various data sources help provide a comprehensive understanding of the case being studied.

On the other hand, ethnography primarily relies on participant observation, where the researcher actively engages with the group being studied, often for an extended period. This immersive approach allows the researcher to gain firsthand experience and insights into the culture, norms, and practices of the group. Ethnographers may also conduct interviews and collect artifacts or documents to supplement their observations.

Time and Resources

Case studies and ethnography also differ in terms of the time and resources required to conduct the research. Case studies are often more time-efficient, as they focus on a specific case or event. Researchers can collect data relatively quickly and analyze it in a shorter timeframe. However, the depth of analysis and the level of detail may vary depending on the complexity of the case.

On the other hand, ethnography is a time-consuming process that requires a significant investment of time and resources. Researchers need to spend an extended period in the field, building rapport with the community, and gaining their trust. The immersive nature of ethnography allows for a more comprehensive understanding of the group, but it also demands a longer-term commitment from the researcher.

Analysis and Interpretation

Both case study and ethnography involve a detailed analysis and interpretation of the collected data. In case studies, researchers often employ various analytical frameworks or theories to make sense of the data and draw conclusions. The analysis may involve identifying patterns, themes, or causal relationships within the case being studied.

Similarly, ethnographic research involves a rigorous analysis of the collected data. Ethnographers often engage in a process called coding, where they categorize and organize the observations, interviews, and other data sources. This coding process helps identify recurring themes, cultural practices, and social dynamics within the group. Ethnographers may also use theoretical frameworks to interpret their findings and provide a deeper understanding of the observed phenomena.

Applications

Both case study and ethnography have diverse applications across various disciplines. Case studies are commonly used in psychology, business, medicine, and law to examine individual cases, diagnose specific conditions, or understand unique situations. They provide valuable insights into complex phenomena that cannot be easily replicated or studied through other research methods.

On the other hand, ethnography finds its applications in anthropology, sociology, cultural studies, and other social sciences. Ethnographic research allows for a holistic understanding of different cultures, communities, and social groups. It helps uncover the underlying meanings, values, and practices that shape the lives of individuals within a specific cultural context.

In conclusion, case study and ethnography are two distinct research methods that offer valuable insights into specific cases or cultural contexts. While case studies provide a detailed analysis of a particular case, ethnography allows for a broader understanding of social and cultural dynamics. Both methods have their strengths and limitations, and the choice between them depends on the research objectives, scope, and available resources. By employing these research methods appropriately, researchers can gain a deeper understanding of the complexities of human behavior, culture, and society.

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Difference Between Case Study and Ethnography

Main difference – case study vs ethnography.

Case studies and ethnographies are two popular detailed, qualitative studies used in the field of social science . Although there are certain similarities between these two methods such as their holistic nature, and the extended time period, there are also some differences between the two. The main difference between case study and ethnography is their focus; ethnography aims to explore cultural phenomenon whereas case studies aim to describe the nature of phenomena through a detailed investigation of individual cases.

What is a Case Study

A case study is a detailed investigation of a single event, situation or an individual in order to explore and unearth complex issues. Yin (1984) defines case study as “an empirical inquiry that investigates a contemporary phenomenon within its real-life context; when the boundaries between phenomenon and context are not clearly evident; and in which multiple sources of evidence are used.” Although case studies are always associated with qualitative research, they can also be quantitative in nature. They are often used to explore community-based issued such as poverty, illiteracy, unemployment, prostitution, and drug addiction.

A successful case study is context-sensitive, holistic, systematic, layered and comprehensive. The process of a case study involves,

• Identifying and defining the research questions
• Selecting the cases and deciding techniques for data collection and analysis
• Collecting data in the field
• Evaluating and analysing the data
• Preparing the report

Data collection methods in a case study may involve interviews, observations, questionnaires, checklists, analysis of recorded data and opinionnaires. Case studies can also be divided into different categories. Exploratory, descriptive and explanatory case studies are three such categories.

Case studies are preferred by many researchers in the field of social sciences since they offer detailed and in-depth information about a particular phenomenon. However, it is difficult to use the data obtained from a case study to form generalisation since it only focuses on a single event or phenomenon.

Figure 1: Questionnaires are one method of data collection in a case study.

What is an Ethnography

Ethnography is a detailed and in-depth study of everyday life and practice. In other words, it is the systematic study of people and cultures. A researcher who is engaged in ethnography is known as an ethnographer . Ethnographers explore and study culture from an insider’s point of view (emic perspective).

Ethnography traditionally involved focusing on a bounded and a definable race, ethnicity or group of people; for example, study of a particular African tribe. However, modern ethnography also focus on different aspects of the contemporary social life.

Ethnographic research mainly involves field observations, i.e., observations of behaviour in a natural setting. The researchers have to spend a considerable amount of time inside a community in order to make such observations. Information about particular socio-cultural phenomena in a community is typically obtained from the members of that particular community. Participant observation and interviews are two of the main data collection methods in this type of studies. Ethnographic studies take a longer period of time than other types of research since it takes long-term involvement and observation to understand the attitudes, beliefs, and behaviours of a community.

Figure 2: Observation and participant interviews are main data collection methods in ethnography.

Definition 

Case Study: A case study is a detailed investigation of a single event, situation or an individual in order to explore and unearth complex issues.

Ethnography: An ethnography is the detailed and systematic study of people and cultures.

Case Study: Case studies focus on a single event, incident or individual.

Ethnography: Ethnography observes cultural phenomenon.

Case study: Case study intends to uncover the tacit knowledge of culture participants.

Ethnography: Ethnography aims to describe the nature of phenomena through detailed investigations of individual cases.

Data Collection Methods

Case Study: Case studies may use interviews, observations, questionnaires, checklists, analysis of recorded data and opinionnaires.

Ethnography: Ethnographic studies use participant observations and interviews.

Special Requirements

Case Study: The researcher does not have to live in a particular community.

Ethnography: The researcher has to spend a considerable amount time inside that particular community.

Conclusion 

Case study and ethnography may have some similarities; however, there is a considerable difference between case study and ethnography as explained above. The main difference between case study and ethnography lies in their intent and focus; case studies intend to uncover the tacit knowledge of culture participants whereas ethnographic studies intend to describe the nature of phenomena through detailed investigations of individual cases. There are also differences between them in terms of data collection and analyis. 

• Cohen, Arie. “Ethnography and case study: a comparative analysis.”  Academic Exchange Quarterly  7.3 (2003): 283-288.
• Yin, Robert. “Case study research. Beverly Hills.” (1984).

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• “plings_005” by  Plings   (CC BY 2.0)  via Flickr
• “Bronisław Malinowski among Trobriand tribe 3”  By Unknown (maybe Stanisław Ignacy Witkiewicz, 1885-1939) (Public Domain) via Commons Wikimedia

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Research Guides

Ethnographic Case Studies

Jeannette Armstrong; Laura Boyle; Lindsay Herron; Brandon Locke; and Leslie Smith

Description

This research guide discusses ethnographic case study. While there is much debate over what, precisely, delimits a case study , the general consensus seems to be that ethnographic case studies differ from other types of case studies primarily in their focus, methodology, and duration. In essence, ethnographic case studies are case studies “employing ethnographic methods and focused on building arguments about cultural, group, or community formation or examining other sociocultural phenomena” (Schwandt & Gates, 2018, p. 344), typically with a long duration, per the demands of ethnographic work. In essence, ethnographic case studies are case studies “employing ethnographic methods and focused on building arguments about cultural, group, or community formation or examining other sociocultural phenomena” (Schwandt & Gates, 2018, p. 344), typically with a long duration, per the demands of ethnographic work. Indeed, in its very situatedness, ethnography has a “case study character” and is “intimately related” to case studies (Ó Rian, 2009, p. 291); though there is currently a move to extract ethnographic work from overly situated contexts and use extended case methods, “[e]thnographic research has long been synonymous with case studies, typically conceived of as grounded in the local and situated in specific, well-defined and self-contained social contexts” (Ó Rian, 2009, p. 290). Because ethnography, in practice, is often a kind of case study, it’s useful to consider ethnography and case studies each in their own right for a fuller picture of what ethnographic case study entails.

Ethnographic research is one approach under the larger umbrella of qualitative research. Methodologically, it is, “a theoretical, ethical, political, and at times moral orientation to research, which guides the decisions one makes, including choices about research methods” (Harrison, 2014, p. 225), that is at its crux “based upon sharing the time and space of those who one is studying” (Ó Rian, 2009, p. 291)–a situated, nuanced exploration seeking a thick description and drawing on methods such as observation and field notes. According to …an ethnography focuses on an entire culture-sharing group and attempts to develop a complex, complete description of the culture of the group. Creswell and Poth (2018), an ethnography focuses on an entire culture-sharing group and attempts to develop a complex, complete description of the culture of the group. In doing so, ethnographers look for patterns of behavior such as rituals or social behaviors, as well as how their ideas and beliefs are expressed through language, material activities, and actions (Creswell & Poth, 2018). Yin (2016)  suggests that ethnographies seek “to promote embedded research that fuses close-up observation, rigorous theory, and social critique. [Ethnographies foster] work that pays equal attention to the minutiae of experience, the cultural texture of social relations, and to the remote structural forces and power vectors that bear on them” (p. 69).

Case study research, meanwhile, is characterized as an approach “that facilitates exploration of a phenomenon within its context using a variety of data sources” (Baxter & Jack, 2008, p. 544). The aim of case studies is precise description of reconstruction of cases (Flick, 2015). The philosophical background is a qualitative, constructivist paradigm based on the claim that reality is socially constructed and can best be understood by exploring the tacit, i.e., experience-based, knowledge of individuals. There is some debate about how to define a The philosophical background is a qualitative, constructivist paradigm based on the claim that reality is socially constructed and can best be understood by exploring the tacit, i.e., experience-based, knowledge of individuals. “case” (e.g., Ó Rian, 2009), however. As Schwandt and Gates (2018) write, “[A] case is an instance, incident, or unit of something and can be anything–a person, an organization, an event, a decision, an action, a location”; it can be at the micro, meso, or macro level; it can be an empirical unit or a theoretical construct, specific or general; and in fact, “what the research or case object is a case of may not be known until most of the empirical research is completed” (p. 341). The two authors conclude that given the multifarious interpretations of what case study is, “[b]eyond positing that case study methodology has something to do with ‘in-depth’ investigation of a phenomenon . . . , it is a fool’s errand to pursue what is (or should be) truly called ‘case study’” (p. 343, 344).

Baxter, P., & Jack, S. (2008). Qualitative case study methodology: Study design and implementation for novice researchers. The Qualitative Report, 13 (4), 544-559.

Creswell, J. W., & Poth, C. N. (2018). Qualitative inquiry & research design: Choosing among five approaches (4th ed.). Los Angeles, CA: SAGE.

Flick, U. (2015). Introducing research methodology . Los Angeles, CA: SAGE.

Rian, S. (2009). Extending the ethnographic case study. In D. Byrne & C. C. Ragin (Eds.), The SAGE handbook of case-based methods (pp. 289–306). Thousand Oaks, CA: SAGE.

Schwandt, T. A., & Gates, E. F. (2018). Case study methodology. In N. K. Dezin & Y. S. Lincoln (Eds.), The SAGE handbook of qualitative research (5th ed.; pp. 341-358). Thousand Oaks, CA: SAGE.

Yin, R. K. (2016). Qualitative research from start to finish (2nd ed.). New York, NY: The Guilford Press.

Key Research Books and Articles on Ethnographic Case Study Methodology

Fusch, G. E., & Ness, L. R. (2017). How to conduct a mini-ethnographic case study: A guide for novice researchers. The Qualitative Report , 22 (3), 923-941.  Retrieved from https://nsuworks.nova.edu/tqr/vol22/iss3/16

In this how-to article, the authors present an argument for the use of a blended research design, namely the Ethnographic Case Study, for student researchers. To establish their point of view, the authors reiterate recognized research protocols, such as choosing a design that suits the research question to ensure data saturation. Additionally, they remind their reader that one must also consider the feasibility of the project in terms of time, energy, and financial constraints.

Before outlining the benefits and components of the Ethnographic Case Study approach, the authors provide detailed narratives of ethnographic, mini-ethnographic (sometimes referred to as a focused ethnography ), and case study research designs to orient the reader. Next, we are introduced to the term mini-ethnographic case-study design, which is defined as a blended design that is bound in time and space and uses qualitative ethnographic and case study collection methods. The benefits of such an approach permit simultaneous generation of theory and the study of that theory in practice, as it allows for the exploration of causality.

Ethnographic Case Study research shares many characteristics with its parent approaches.  For example, subjectivity and bias are present and must be addressed. Next, data triangulation is necessary to ensure the collected qualitative data and subsequent findings are valid and reliable. Data collection methods include direct observation, fieldwork, reflective journaling, informal or unstructured interviews, and focus groups. Finally, the authors discuss three limitations to the ethnographic case study. First, this design requires the researcher to be embedded, yet the duration of time may not be for as long when compared to full-scale ethnographic studies.  Second, since there are fewer participants, there should be a larger focus on rich data as opposed to thick data, or said differently, quality is valued over quantity. Third, the researcher must be aware that the end-goal is not transferability, but rather the objective is to gain a greater understanding of the culture of a particular group that is bound by space and time.

Gregory, E. & Ruby, M. (2010) The ‘insider/outsider’ dilemma of ethnography: Working with young children and their families in cross-cultural contexts. Journal of Early Childhood Research, 9 (2), 1-13. https://doi.org/10.1177/1476718X10387899

This article focuses on the dilemma of insider and outsider roles in ethnographic work. It challenges the notion that a researcher can be both an insider and an outsider at the same time. There is no insider/outsider status; it is one or the other–not both.

It is easy to make assumptions about one’s status as an insider. It is not uncommon for a researcher to assume that because one is working amongst his/her “own” people sharing a similar background, culture, or faith that she/he is an insider. Likewise, a researcher may assume that it will be easy to build rapport with a community with which he/she has commonalities; however, it is important to keep in mind that the person may be an insider but the researcher may not have this same status. When the person enters into the protective space of family or community as a researcher, it is similar to being an outsider. Being a researcher makes one different, regardless of the commonalities that are shared. It is not the researcher’s presumed status of “insider” or “outsider” that makes the difference; rather, researcher status is determined by the participants or community that is being studied. It is wise for researchers to understand that they are distinctively one of “them” as opposed to one of “us”. This is not to say that researchers cannot become an “insider” to some degree. But to assume insider status, regardless of the rationale, is wrong. Assuming common beliefs across cultures or insider status can lead to difficulties that could impact the scope or nature of the study.

In conclusion, regardless of the ethnographic design (e.g., realist ethnography, ethnographic case study, critical ethnography), it is important for the researcher to approach the study as an “outsider”. Although the outsider status may change over time, it essential to understand that when one enters a community as a researcher or becomes a researcher within a community, insider status must be earned and awarded according to the participants in the community.

Ó Rian, S. (2009). Extending the ethnographic case study. In D. Byrne & C. C. Ragin (Eds.), The SAGE handbook of case-based methods (pp. 289–306). Thousand Oaks, CA: SAGE.

In this chapter, Ó Rian valorizes the problems and potential hiding within the vagaries of ethnographic “case” boundaries, arguing that “whereas the fluid and multi-faceted aspects of the ethnographic case pose dilemmas for ethnographers, they can also become resources for ethnographers in exploring theoretical and empirical questions” (p. 292). Indeed, he views the idea of firm case boundaries as a weakness, as “definitions of the case will rule in and out certain social processes,” and suggests ethnography’s flexibility can deal with this problem well because it permits researchers to “question the boundaries of the case as the study proceeds,” leading to a “de- and re-construction of the case that . . . places ethnography at the centre of a resurgent contextualist paradigm of social inquiry . . . that is increasingly self-consciously exploring its own theoretical and methodological foundations” (p. 304). Most of the chapter delves into these possibilities for exploration, offering an insightful (if occasionally difficult to follow) perspective on how they have been proceeding.

The chapter offers considerations that might be particularly helpful to researchers undertaking ethnographic case studies who are struggling to connect their cases, so firmly rooted in a particular context and their own personal experiences and observations, to a bigger picture. Ó Rian elucidates the reflexive strategies various ethnographers have adopted as they’ve sought “[t]o achieve a link between context-specific data and meso- or macro-level generalizations,” categorizing these strategies into three “interlocking extensions of case study research” (p. 292): personal extensions (related to “the shaping of the boundaries of the case by the ethnographer’s location within the field and . . . how ethnographers can convey their personalized experiences and tacit learning to readers” [p. 292]), theoretical extensions (which bridge the gap between the situated worlds being explored and “the larger structures and processes that produced and shaped them” [p. 292]), and empirical extensions (“creative efforts to experiment with the empirical boundaries of the ethnographic case” [p. 292] by bringing in, for example, historical context, social networks, etc.). The crux of his argument is that ethnographic researchers have a prime opportunity to push against the boundaries of their context and “extend their cases across space, time and institutional structures and practices” so that the ethnographer is “multiply, if perhaps a bit uncomfortably, situated” (p. 304), and also to include an “emphasis on the ongoing process of theoretical sampling within the process of the ethnographic study, with close attention to be paid to the paths chosen and rejected, and the reasons for these decisions” (p. 304). These kinds of extensions offer an opportunity for theories to “be refined or reconstructed” as the researcher attempts to locate their personal experience within a broader framework, allowing “[t]he case study . . . to challenge and reconstruct the preferred theory” while also connecting the case to a larger body of work, particularly because theory “carries the accumulated knowledge of previous studies” (p. 296).

Ó Rian’s in-depth descriptions of how other researchers have varyingly handled these personal, theoretical, and empirical extensions might be a bit overwhelming to novice researchers but overall can offer a way to “locate their cases within broader social processes and not solely within their own personal trajectories” (p. 294)–while also helping to situate their reflections and extensions within a larger body of literature replete with researchers struggling with similar questions and concerns.

This chapter offers an  in-depth, generally accessible (but occasionally overwhelming) overview of case studies of all sorts and integrates an extensive review of relevant literature. The authors provide an informed perspective on various considerations and debates in the case study field (e.g., varying definitions of what a “case” is construed to be; interpretive vs. critical realist orientations; the relative benefits of and techniques involved in different types of approaches), helping novice researchers locate and better describe their own approach within the context of the field. The information is quite detailed and delves into a wide variety of case study types, suggesting this chapter might best be first skimmed as an initial introduction, followed by more careful readings of relevant sections and perusal of the key texts cited in the chapter. The breadth of this chapter makes it a helpful resource for anyone interested in case-study methodology.

The authors do not specifically explore ethnographic case studies as a separate type of case study. They do, however, briefly touch on this idea, locating ethnography within the interpretive orientation (comprising constructivist approaches offering “phenomenological attention to lived experience” [p. 344]). The authors also cite researchers who distinguish it due to its “[employing] ethnographic methods and focus on building arguments about cultural, group, or community formation or examining other sociocultural phenomena” (p. 344). Ethnographic case study is placed in contrast to case studies that use non-ethnographic methods (e.g., studies “relying perhaps on survey data and document analysis”) or that “are focused on ‘writing culture’” (p. 344).

Two aspects of this chapter are particularly useful for novice researchers. First, it is worth highlighting the authors’ discussion of varying definitions of what a “case” is, as it can provide an interesting reconceptualization of the purpose of the research and the reason for conducting it. The second noteworthy aspect is the authors’ detailed descriptions of the four main case study uses/designs ( descriptive, hypothesis generation or theory development, hypothesis and theory testing , and contributing to normative theory ), which the authors beautifully align with the respective purposes and methods of each type while also offering insight into relevant conversations in the field.

Further Readings

Moss, P. A., & Haertel, E. H. (2016). Engaging methodological pluralism. In D. H. Gitomer & C. A. Bell (Eds.), Handbook of Research on Teaching (pp. 127–247). Washington, DC: American Educational Research Association.

Simons, H. (2014). Case study research: In-depth understanding in context. In P. Leavy (Ed.), The Oxford handbook of qualitative research (pp. 455–470). Oxford, UK: Oxford University Press.

Recent Dissertations Using Ethnographic Case Study Methodology

Cozzolino, M. (2014). Global education, accountability, and 21st century skills: A case of curriculum innovation . Retrieved from ProQuest Dissertations & Theses Global. (Order Number 3648007)

This dissertation is self-described as an ethnographic case study of a small, public, suburban high school in Pennsylvania. In this study, the researcher investigates the school’s process of integrating global education into its curriculum by implementing a school-wide initiative (Global Studies Initiative or GSI) as well as a program of study (Global Studies Credential or GSC). Cozzolino asserts that her framework has been shaped by both social constructivism and critical/Freirean pedagogy. From the constructivist view, she views knowledge as constructed through social interaction, and thus she sought to understand the world in which the research participants work, learn, and experience large parts of their lives. It is here that she situates the first three research questions that entail looking at the the GSI and the GSC in terms of their features, rationales, and implementations. The fourth question involves understanding the students’ views and perceptions of the GSC and here the author takes up a critical and Freirean pedagogy to honor and hear the voices of the students themselves.

The study design is therefore an embedded single-case study in that it is bound by the place (Olympus High School) and by its population. Furthermore, it is also a case within a case, as it seeks to understand the students’ perspectives of the global programming. The case study is ethnographically rooted through the multiple ethnographic data sources such as participant-observations and a prolonged engagement at the research site. Cozzolino embedded herself in the research site over a five-year period and became an active and invested member of the school community, thereby establishing a sound rationale for an ethnographic case-study approach.

The author concludes that there were some competing priorities about the overall initiative from stakeholders inside and outside the school district. This resulted in a less than ideal implementation of the program of study across the curriculum. Nonetheless, the students who were enrolled in these courses reported it to be a worthwhile experience. While Cozzolino presents specific recommendations for the improvements at Olympus High, she also offers implications for several other groups. First, she provides advice for implementation to other educational institutions that aim to integrate a global focus into their curriculum. Next, she gives recommendations for local, state, and national policy changes. Finally, she gives suggestions for engaging all parties in fruitful discourse to achieve their ultimate goal of implementing a meaningful and valuable global education curriculum.

Hamman, L. (2018). Reframing the language separation debate: Language, identity, and  ideology in two-way immersion . Retrieved from ProQuest Dissertations & Theses Global. (Order Number 2089463322)

This study explored the issues of surrounding language separation in two-way immersion (TWI) classrooms. The author looked at how classroom language practices and teacher ideologies influenced the student experience and how the students’ understanding of what it means to be bilingual is influenced in a classroom that purports to be equitable in terms of language use.

The study is theoretically grounded in sociocultural, critical, and postcultural theories and adapted Lemke’s ecosocial system to conceptualize TWI classroom. Hamman also drew upon translanguaging theory and dynamic bilingualism to provide a framework for a more modern and nuanced perspective of bilingualism, bilingual learning, and bilingual students.

The author combined a single-case study approach with ethnographic methods to “engage in close analysis of classroom language use and the discursive negotiation of identities and ideologies, while situating these analyses within a rich understanding of the sociolinguistic context of this TWI classroom” (p. 78-79). She employed various ethnographic methods such as taking fieldnotes, conducting participant observations, interviewing, and memoing. The study is “bound” in that it takes place in one 2nd-grade classroom with one teacher and 18 students over the course of one year.

Hamman concludes that student perspectives on language separation should be considered, since this forced separation of language influenced how they thought of their developing bilingualism and identity as bilinguals. Furthermore, the study envisages a linguistic “middle ground” to strict separation that allows for appropriate and meaningful spaces for linguistic negotiation. Finally, this dissertation asserts that the strict separation of languages codifies a monoglossic ideology mindset and limits learners’ possibilities for learning and making connections across languages.

Kim, S. (2015). Korean migrant youth identity work in the transnational social field: A link between identity, transnationalism, and new media literacy . Retrieved from University of Missouri-St. Louis Institutional Repository Library. https://irl.umsl.edu/dissertation/158/

This doctoral dissertation takes an ethnographic case study approach to explore the identity formation of transnational Korean youth. The researcher, herself a Korean immigrant to the U.S. navigating complex identity processes, focuses on these research questions: “1) what are the contexts in which migrant youth negotiate their identities? 2) how do youth understand and negotiate their sense of belonging? 3) how do youth’s [sic] cultural and literacy practices inform and shape their identities? 3i) how do youth make use of transnational new media for their identity work? 3ii) how do literacy practices potentially shape their identities?” (p. 7).

Drawing on Leander and McKim (2013), the author conceptualizes her study as a “connective ethnography” (p. 36) encompassing multiple spaces, both digital and physical, in which “space” comprises a variety of relationships, instead of a more traditional ethnography bounded by physical space. The “case study” aspect, meanwhile, refers to the four specific participants in which she chose to focus. She chose Korean immigrants in St. Louis, in general, due to their mobility between the U.S. and Korea, their high use of digital communication and information technology, and their limited access to the cultural resources of Korea in a Midwestern city. From an initial 32 possible participants purposively selected, the researcher chose four focal participants based on their Korean ethnicity, biliteracy in Korean and English, age (between 11 and 19 years old), residence in the U.S. (for at least 2 years), and their use of digital communication technologies. Data sources included an initial screening survey, an identity map each participant created, informal recorded conversations, recorded interviews in either English or Korean, field notes from the researcher’s interactions with the youth in various settings (home, school, community centers), and “literacy documents” (evidence of literacy practices from participants’ school and home, emails to the researcher, or activities in digital spaces). She used social semiotic multimodal discourse analysis and what she describes as “grounded theory thematic analysis” to analyze the data.

This is a reflective, thoughtful, and interesting dissertation. The author carefully notes the relationship between the data sources and her research questions, specifically addresses steps she took to ensure the validity of the data (e.g., triangulation via multiple data sources and theoretical frameworks, member checks, and feedback from her professors and other researchers), and discloses her own positionalities and biases. Her discussion includes not only a clear thematic exploration of her findings but also offers specific practical suggestions for how her findings can be applied and extended in the classroom.

Internet Resources

Abalos-Gerard Gonzalez , L. (2011). Ethnographic research . Retrieved from https://www.slideshare.net/lanceabalos/ethnographic-research-2?from_action=save

Created by Lance Gerard G. Abalos, teacher at the Department of Education-Philippines, this SlideShare, Ethnographic Research , explains that, regardless of specific design, ethnographic research should be undertaken “without any priori hypothesis to avoid predetermining what is observed or that information is elicited from informants . . .hypotheses evolve out of the fieldwork itself” (slide 4). It is also suggested that researchers refer to individuals from whom information is gathered as ‘informants’ is preferred over the term ‘participants’ (slide 4).

According to Abalos, “It is not the data collection techniques that determine whether the study is ethnographic, but rather the ‘socio-cultural interpretation’ that sets it apart from other forms of qualitative inquiry” (slide 6). A social situation always has three components: a place, actors, and activities (slide 8) and it is the socio-cultural interpretation of the interactions of these three that is the focus of the ethnographic research.

Ethnographic questions should guide what the researcher sees, hears, and collects as data (slide 9). When writing the ethnography, it is essential to ‘bring the culture or group to life’ through the words and descriptions used to describe the place, actors, and activities.

Abalos describes three types of ethnographic designs:

• Realist Ethnographies : an objective account of the situation, written dispassionately from third-person point of view, reporting objectively on information learned from informants, containing closely edited quotations (slide 11-12).
• Ethnographic Case Studies : researchers focus on a program, event, or activity involving individuals rather than a group, looking for shared patterns that develop as a group as a result of the program, event, or activity (slide 13).
• Critical Ethnographies: incorporating a ‘critical’ approach that includes an advocacy perspective, researchers are interested in advocating against inequality and domination (slide 14).

As ethnographic data is analyzed, in any design (e.g., realist, case study, critical), there is a shift away from reporting the facts to making an interpretation of people and activities, determining how things work, and identifying the essential features in themes of the cultural setting (slide 22). “The ethnographer must present the description, themes, and interpretation within the context or setting of the culture-sharing group (slide 23).

Brehm, W. (2016, July 21). FreshEd #13 – Jane Kenway . Retrieved from http://www.freshedpodcast.com/tag/ethnography/ (EDXSymposium: New Frontiers in Comparative Education).

Jane Kenway is with the Australian Research Council and is an emeritus professor at Monash University in Melbourne, Australia. In this podcast, she explains “traditional’ forms of ethnography and multi-sited global ethnography, which are her area of specialization. She considers “traditional” ethnography to have three components: space, time, and mobility.

Insider/outsider stance is explained within the context of spatiality, community, and culture of space specific to ‘traditional” ethnography. Researchers are outsiders who are attempting to enter a space and become insiders, then leave the space once the research is completed. Research is conducted over an extended period of time in one place/space. As a result, researchers will get to know in an extremely intimate manner the ways of life of the community or group. “Work is supposed to be a temporality of slowness. In other words, you don’t rush around like a mad thing in a field, you just quietly and slowly immerse yourself in the field over this extended period of time and get to understand it, get to appreciate it bit by bit.” (minute 7:56).

“Traditional” ethnographers are not necessarily interested in mobility over time or exploring who enters and exits the site. Most ethnographers are only interested in the movement that occurs in the space that is being studied during the time that they are in the field. It is about looking at the roots of the space, not necessarily about looking at the movements into and out of the space.

Multi-sited global ethnography tries to look at the way bounded sites can be studied as unbounded and on the move, as opposed to staying still. It considers how certain things (e.g., things, ideas, people) are  followed as they move. The researcher moves between sites, studying change that is encountered in different sites. From this perspective, the interested lies in the connections between sites. Multiple sites with commonalities can also be studied at the onset, without the need to physically follow.

Paulus, T. M., Lester, J. N., & Dempster, P. G. (2014). Digital Tools for Qualitative Research. Los Angeles, CA: SAGE.

While this text is not solely about ethnographic case studies, it is rich with countless ideas for utilizing digital tools to aid in the multiple facets of qualitative research. In Chapter 5 of their text, entitled Generating Data, the authors dedicate a section to exploring Internet archives and multimedia data. They state that, “in addition to online communities, the Internet is rich with multimedia data such as professionally curated archives, ameteur-created YouTube and Vimeo videos and photo-sharing sites” (p. 81). They provide three specific examples, each explained below: The Internet Archive, CADENSA, and Britain’s BBC Archives.

The Internet Archive ( https://archive.org ) is a non-profit library of millions of free books, movies, software, music, websites, and more. The site also contains a variety of cultural artifacts that are easily available and downloadable. CADENSA ( http://cadensa.bl.uk ) is an online archive of the British Library Sound and Moving Image Catalogue. And finally, the BBC Archives ( http://www.bbc.co.uk/archive/ ) is a particularly useful site for researchers interested in reviewing documentary film and political speeches.

Wang, T. (2016, September). Tricia Wang: The human insights missing from big data. [Video file]. Retrieved from  https://www.ted.com/talks/tricia_wang_the_human_insights_missing_from_big_data

In this TED Talk, Tricia Wang discusses her ethnographic work with technology and advocates for the need to save a place for thick data as opposed to relying only on big data. She argues that while companies invest millions of dollars in generating big data because they assume it will efficiently provide all the answers, it routinely does not provide a good return on investment. Instead, companies are left without answers to the questions about consumer preferences and behaviors, which leaves them unprepared for market changes.

In turn, Wang coins the term thick data, which is described as “precious data from humans, like stories, emotions, and interactions that cannot be quantified” (Minute 11:50). Wang suggests that this thick data may only come from a small group of individuals, but it is an essential component that can provide insights that are different and valuable. As an example, while working for Nokia, her ethnographic experiences in China provided her with new understandings on the future demand for smartphones. However, her employer did not take her findings seriously, and as a result, they lost their foothold in the technology market. She posits that a blended approach to collecting and analyzing data (i.e. combining or integrating thick data analysis with big data analysis) allows for a better grasp on the whole picture and making informed decisions.

Her conclusions for a blended approach to data collection also have implications for blending ethnographic and case-study approaches. While Wang took more of an ethnographic approach to her research, one could envision what her work might have looked like if she had used an Ethnographic Case Study approach. Wang could have clearly defined the time and space boundaries of her various ethnographic experiences (e.g. as a street vendor, living in the slums, hanging out in internet cafés). This would have allowed her to infer causality through the generation of thick data with a small sample size for each location and bound by each group.

Ethnographic Case Studies Copyright © 2019 by Jeannette Armstrong; Laura Boyle; Lindsay Herron; Brandon Locke; and Leslie Smith is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License , except where otherwise noted.

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Qualitative Research Journal

ISSN : 1443-9883

Article publication date: 6 April 2009

In this paper we narrate a story of working on a large project funded by an Australian Research Council Linkage grant the ‘Keeping Connected: Young People, Identity and Schooling’ project. The purpose of the study is to consider the social connection and schooling of young people who have experienced long‐term chronic illness. While the research involves both quantitative and qualitative elements, the qualitative component is the largest and involves the most researcher time and diversity. At an early stage of the project, three of the researchers working on the qualitative team consider why the study was framed as a series of case studies rather than as ethnography. The second issue considered in this paper is the different approaches to data collection, data analysis and truth claims we might take.

• Ethnography
• Funded research
• Methodology

White, J. , Drew, S. and Hay, T. (2009), "Ethnography Versus Case Study ‐ Positioning Research and Researchers", Qualitative Research Journal , Vol. 9 No. 1, pp. 18-27. https://doi.org/10.3316/QRJ0901018

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10 Additional Qualitative Approaches: Ethnography, Grounded Theory, Narrative, and Phenomenology

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This chapter introduces four approaches to inquiry—grounded theory, narrative, phenomenology, and ethnography—that, together with case study, comprise five primary qualitative research designs. The purpose of grounded theory is to develop a unified theoretical explanation for a process, action, or interaction. The theory is “grounded” in data generated with participants who have experienced that process, as opposed to being adopted from existing literature. “Stories lived and told” are the focal point of narrative inquiry. Inquirers elicit, interpret, and report detailed stories of individuals’ life experiences in order to illuminate phenomena or raise questions for readers’ consideration. In phenomenological research, the study’s central phenomenon will be some kind of human experience, such as grief or enjoyment. Analysis focuses on identifying the essence of that phenomenon for individuals who have experienced it. In ethnography, the researcher describes and interprets the shared and learned patterns of a culture-sharing group. The product of inquiry is a rich, complex description of the culture-sharing group at the heart of the study. Exemplar studies drawn from music education illustrate the common types and key features of each design.

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More than numbers: Ethnography or phenomenology?

Now phenomenology is a theoretical approach in which the researcher considers the individual’s experiences, perceptions and behaviours. The phenomenological researcher is most interested in the ‘lived experience’ of that individual – their experiences of their imagination, the outside world, and social interaction. They might chose to explore how an individual assigns meaning or interprets the things they experience. In our research question, they might think about the way a teenager with DMD thinks about the progression of their disease, or how their sense of personal identity changes over time.

Meanwhile, a contrasting view is in ethnography. Here, researchers consider that the individual does not exist alone, but is influenced by society and will, in some ways, be constrained by their position within that society. For example, the decisions that we make are, in a way, limited by what society has taught us is socially acceptable and therefore we would not even consider certain choices. These cultural values and assumptions of ‘normality’ are particularly important to the ethnographic researcher. Thus, our research question into DMD, might be shaped to consider the social roles and expectations of young men with DMD.

So, what does it matter whether you use phenomenology or ethnography? Well, not only does this shape the questions asked in the research, but also the way it is performed. If you are most interested in an individual’s account of an experience (phenomenology), you might use in-depth semi-structured interviews to obtain that information. Meanwhile, if you want to know about experiences within society, or cultural values, you might also use interviews but probably include very different questions. Or you might use a focus group to hear how a group of teenagers discuss the issue, or even use a period of observation, for example in school or on a respite holiday, to gain that data.

So you see, it is important before you start, to think about what kind of qualitative researcher you might be?*

*Disclaimer – you might be one kind of researcher for one piece of research and one kind of researcher for another…. Some might claim this is due to social influences…

Comment and Opinion | Open Debate

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• v.8; Jan-Dec 2021

Comparative Ethnographic Narrative Analysis Method: Comparing Culture in Narratives

Denise saint arnault.

1 University of Michigan School of Nursing, Ann Arbor MI, USA

Laura Sinko

2 Temple University, Philadelphia, PA, USA

Narrative data analysis aims to understand the stories’ content, structure, or function. However narrative data can also be used to examine how context influences self-concepts, relationship dynamics, and meaning-making. This methodological paper explores the potential of narrative analysis to discover and compare the processes by which culture shapes selfhood and meaning making. We describe the development of the Comparative Ethnographic Narrative Analysis Method as an analytic procedure to systematically compare narrators’ experiences, meaning making, decisions, and actions across cultures. This analytic strategy seeks to discover shared themes, examine culturally distinct themes, and illuminate meta-level cultural beliefs and values that link shared themes. We emphasize the need for a shared research question, comparable samples, shared non-biased instruments, and high-fidelity training if one uses this qualitative method for cross-cultural research. Finally, specific issues, trouble-shooting practices, and implications are discussed.

Attention to culture in nursing research has a deep tradition and a variety of perspectives, including Transcultural Nursing ( Leininger & McFarland, 2006 ; Singleton, 2017 ) and Anthropological Nursing ( Holden & Littlewood, 2015 ; Morse, 1989 ). Most of these approaches rely on ethnographic methods and narrative or qualitative interviewing data ( Roper & Shapira, 2000 ). These methods allow nurses to understand cultural conceptions of illness and suffering, care, and cure ( Dougherty & Tripp-Reimer, 1985 ; Vonarx, 2010 ). However, in an increasingly multicultural world, understanding the role of culture, suffering, and health relies on advancing cultural theories of illness, health, and care using comparative methods ( Saint Arnault, 2018b ). This paper explores the need for systematic comparison of our ever-growing bodies of ethnographic work and proposes a method to use comparative methods to understand ethnographic narrative data.

Narrative data gathering is an important type of qualitative data gathering that is emerging in nursing research because it facilitates person-centered care ( Haydon et al., 2018 ). Narrative analysis is a family of related methods directed toward understanding the content, structure, or function of one’s “story” ( Riessman & Quinney, 2005 ). The narrative is a psychosocial activity that organizes links between the self, relationships, time, and morality ( Crossley, 2000 ). These links are essential parts of social exchange and provide ways to relate and validate each other ( Wigren, 1994 ). Narratives usually include sensations, actors, interpretations, causal chains, a meaningful sequence, and a significant conclusion that impacts ongoing and future personal identity and worldview ( Schank, 1990 ).There is an emerging literature that emphasizes attending to the cultural elements that contribute to the meaning of one’s narrative ( Gubrium & Holstein, 2008 ). This paper explores one way to think about, analyze, and compare narrative interviews’ cultural aspects.

Culture in Narrative

We define culture as a collectively formed and shared conceptual understanding of the self, the world, and one’s place within the world. Culture is transmitted across generations and is also internalized as a set of perspectives, proclivities, and motivations that underlie human actions ( Williams, 1995 ). Culture impacts our perceptions of ourselves, our world, our place in that world, and what we do as a part of that world. These perceptions motivate behavior, which in turn enforces and reinforces our “culture.” In this way, culturally based psychological functions are formed as individuals engage in practical social activities, sometimes referred to as cultural practices ( Bottero & Crossley, 2011 ). Our position is that culture operates implicitly within individuals through encompassing systems of meanings and rules ( Heijstra et al., 2013 ). Implicit culture is an embodied tendency that organizes how individuals perceive, react to, and behave within the social world.

Narrative Ethnography has emerged as one way to address culture in narratives. Using ethnography, which is the systematic study of people and cultures from the perspective of the subject ( Hobbs, 2006 ), narratives may be gathered to understand the people’s interactions, beliefs, and contexts. The analysis of culture in narrative can focus on how culture fundamentally shapes the creation of narrative, examining less about the structure of the narrative and more about how the sociocultural context drives its production. Gubrium and Holstein (2008) , for example, have argued that Narrative Ethnography is the ethnographic study of narrativity, or, said another way, it is the ethnographic study of how narratives are context dependent. In a similar vein, Tedlock (1991) gives the example of the production of narrativity as an ongoing dialectical political-personal relationship between researcher and the informant, resulting in “. . .the coproduction of ethnographic knowledge, created and represented . . . within an interactive dialogue” (p. 81). For her, the narrative is understood to be a co-creation between the narrator and their sociocultural world, and a co-creation between the narrator and their audience, in this case, the interviewer.

Another perspective on culture in a narrative is offered by Squire (2008) , who has focused not on narrativity production but rather on how narrative is a window into the role of culture in the formation and maintenance of identity. She writes: “[s]tories operate within ‘interpretive communities’ of speakers and hearers that are political as well as cultural actors. They build collective identities that can lead, albeit slowly and discontinuously, to cultural shifts and political change” ( Squire, 2008 , p. 55). Narratives are a window into our consciousness and reveal (to ourselves and others) the gaps between our experience, our consciousness, and our unconsciousness ( Squire, 2008 ). This perspective provides an avenue to analyze culture in a narrative by examining how culture and context influence how identities develop and transform and how this identity development is storied.

Squire (2008) also helps us conceptualize narratives’ elements by understanding that narratives are about the interactions between sequence, context, and meaning. Narratives include events and the context in which they occur, and how this context informs the meaning-making of the narrator. Incoherence, gaps, and confusion within a story allow the participant to “make sense” of situations, often referencing pressures, powers, constraints, or expectations within the sociocultural context. Participants are therefore making sense of the why of situations, not just for the events but also for the confusions, the lack of continuity, and the times and places in their lives where things were unclear. Narrative’s “hold” culture because they contain the meaning and morality that informs the ‘so what’ of the narrative. Narratives re-present, reimagine, or perhaps reconstruct the past. Stories emphasize the continuity of, or evolution in, personal identity, agency, decision-making, and meaning making. They convey and construct moralities, but these moralities are time-dependent, context-dependent, historically dependent, and dependent on society’s broadest sociocultural ‘traditions.’ Narratives seek closure, transformation, continuity, or change. The outcome in a narrative is a future sense relevant to, or perhaps in contrast with, the prevailing actions, norms, beliefs, or customs of both the narrator and their context ( Black, 2018 ).

Comparative Ethnographic Analysis

Cultural comparison using ethnographic data is essential for explanation, hypothesis testing, and theory generation ( Ember, 2009 ). Comparative ethnography is ethnographic research that explicitly and intentionally builds an argument by analyzing two or more cases. Comparative methods can help nurse scholars see ethnographic work as theoretically innovative instead of merely descriptive ( Simmons & Smith, 2019 ), thereby advancing the science of culture and health care. The comparison of ethnographic data begins with the understanding that the two datasets being compared are explicitly related somehow. The hypothesis is that the two phenomena have a relationship that can be found. According to Schnegg (2014) , cultural comparison requires defining cases, defining the dimensions to be compared, and developing some operations to determine whether the observations differ or are the same. In our case, referring to comparing narratives, the “cases” would be individual narratives. However, any given narrative is about the narrator and does not represent their culture per se ( Abu-Lughod, 1990 ). A person references their view of their culture with regards to their story. Still, a person’s narrative is likely to represent a certain degree of coherence about the cultural norms and values that structure the narrator’s behavior and meaning ( Moore, 2005 ).

The second issue to be considered in cultural comparison is defining the dimensions to compare. Comparing dimensions requires a shared research question, as well as a shared data collection methods. Again, Schnegg instructs us to define the dimension to be compared a priori to ensure that comparators are “. . . roughly similar, overlapping, and interlocking things ( Schneider, 1976 ).

Finally, cultural comparison assumes that the phenomenon of interest is not shared because of some diffusion between cultures. Sharing of “culture” can result from different causes: the phenomena were transmitted or negotiated between the two cases through networks or diffusion; a larger supra-cultural context may have shaped it; or it may have developed independently. In all cases, the analysis should include a systematic comparison of similarities and differences ( Schnegg, 2014 ).

In this paper, we describe the Comparative Ethnographic Narrative Analysis Method (CENAM) to analyze the role of culture in narrative explicitly and systematically. Specifically, we propose using the CENAM to compare culture in narratives because they contain information about the interactions among everyday experiences, socioculturally situated meanings, related identities, and motives, behaviors, and goals.

Comparative Ethnographic Narrative Analysis Method (CENAM)

The CENAM is a qualitative analysis procedure that formalizes and systematizes how culture is revealed in a narrator’s experience, meaning-making, decisions, and actions. In this section, we offer an exemplar of the early work in the development of the procedure, provide procedural detail, and provide a research exemplar illustrating its use in a study.

Early development of the method

In early research, the author developed an analytic method to guide the comparative cultural translation of research instruments ( Saint Arnault et al., 2016 ). Comparative cultural translation (for research instruments) aims to discover whether a research concept can be expressed in various ways in another culture based on cultural beliefs and priorities or whether the concept is indeed culturally distinct. Rather than simply using the translation/back-translation model ( Brislin, 1970 ), comparative cultural translation examines the meanings of concepts from the perspective of a culture and compares these concepts across cultures.

In the following example, we illustrate how this procedure worked in the translation of the concepts held in an English language depression instrument. We found several concepts embedded in the depression instrument that could be linguistically translated as the same but that had profoundly different cultural meanings ( Saint Arnault et al., 2016 ). One example was the depression concept of “getting going.” This concept is an American idiom referencing turning on a car or a motor. It alludes to a sense of “forward movement,” “feeling and ability to move,” and having the energy or drive to carry out daily living activities. In the depression instrument translation, the concept of getting going was translated using the Japanese concept of “ ki. ” Ki refers to vital energy or perhaps energy given through a spiritual force. However, while getting going and ki arise from different cultural values and philosophical references, they are both examples of having “energy to move and do things.” In this example, we decided that these concepts were culturally nuanced but essentially similar.

In that same cultural translation project, the English language concept of hopelessness could be linguistically translated into a Japanese word for “pessimism.” However, the concept of pessimism refers to an attitude, disposition, or personality tendency. In contrast, the English concept of hopelessness references a feeling of insecurity, a lack of confidence, or negative expectations when one imagines their future. As part of our comparative cultural translation procedure, we discussed an alternative Japanese translation of hopelessness, which was the Japanese idiom of shikata ga nai (仕方が無い). This Japanese concept refers to a disposition, attitude, or philosophical position toward difficulty or tragic circumstances ( Long, 1999 ). Shikata ga nai literately translates as “it can’t be helped” or “nothing can be done about it.” In our cultural comparison, we determined that, while there may be an element of hope within that Japanese phrase, hope within an American cultural value system was related to individual notions of will, personal power, and social autonomy ( Del Vecchio Good et al., 1990 ). Therefore, we determined that pessimism, hopelessness, and shikata ga nai were different cultural concepts. In the end, we translated the concept of hopelessness as “a feeling that there is no hope for the future.”

The CENAM procedure

The above example shows the general processes that analyst teams can use for cultural comparison: find and affirm what is shared, note what is similar but is culturally nuanced, and affirm when concepts are genuinely different. For the CENAM method, we employ the same strategy using narrative data. CENAM facilitates identifying shared, culturally distinct, and culturally nuanced interpretations, meanings, and goals within narrative interview data. CENAM is a qualitative analysis method that involves an independent qualitative analysis of each cultural sample to answer the specific research question. After each analytic team confirms their primary themes using a trustworthy method (such as constant comparison), the cultural teams meet to compare the themes they have discovered. We refer to these as “reconciliation meetings.” We call these reconciliation meetings because our goal is to “reconcile differences” and discover what differences cannot be reconciled and require additional analysis. Reconciliation meetings should ideally be directed by a senior researcher familiar with cross-cultural analysis and ethnographic procedures.

In these reconciliation meetings, the researchers work together to compare the definitions, the grounded exemplars, and the meanings of these in their concepts respective to their culture. This first round of meetings aims to sort the codes into categories of “shared” and “culturally distinct.” The researchers come prepared with their entire data analysis set, including codes and quotes. We create a side-by-side comparison of the codes and work together to discover those that are similar but expressed differently. In this stage of the CENAM process, we are looking for the way that the concept “plays out” in the sociocultural setting. If a phenomenon is shared and ultimately deemed to be the same, then it is categorized as shared. Sometimes the concept is deemed to be phenomenologically similar but culturally nuanced. The researchers establish that both participant groups experienced or believed something, but that the cultural emphasis was different, the motivation was different, it was valued differently, or it arose from a different source. These rich discussions are captured in notes the side-by-side table and set aside until the final round of analysis. After these meetings, we generally end with a few concepts that are deemed “probably culturally distinct” or “hypothetically unshared” codes.”

The next step in the procedure is to use hypothesis testing to examine the concepts that are probably culturally distinct. These concepts require another round of analysis for a few reasons. First, we use a hypothesis testing procedure to systematize the analysis. Researchers need to approach these as “hypothetically unshared codes,” which we believe can help eliminate bias. Sources of bias include the fact that each analyst is generally analyzing data from their own culture and language, so they might miss concepts that are present but are so common or understood as to be invisible to the analyst. Alternatively, some concepts are culturally salient, in which case the one analytic research team is more likely to “see” them, be the other team could miss them even when they are present. Second, a concept might be present but might not be captured in the code list, or it might have been lumped together with another similar phenomenon. Third, we believe that this approach allows us to systematically find potentially new and relevant phenomena, which affects the trustworthiness of the overall findings. Therefore, the CENAM procedure is that each analytic team uses the “hypothetically unshared” or “probably distinct codes” from the other culture in their database. They essentially do a new round of analysis with the two or three unshared codes to confirm those phenomena are truly absent in their data or to discover whether it was present but was collapsed or otherwise omitted from the final code list.

Once the shared and distinct phenomena are verified, the research team returns to the reconciliation space to revisit the tableau of findings, confirming shared, confirming distinct, and thoroughly interpreting the culturally nuanced phenomena. We call this final round of analysis the “metanarrative” analysis. We define a metanarrative as the overarching interpretation of the cultural circumstances that provide the structure and meaning for people’s beliefs, actions, and goals. This ultimate metanarrative analysis allows the research teams to understand each cultural group’s cultural nuances while remaining true to its participants’ meanings. We return to the notes we made in the first round and what we discovered in the hypothesis testing round. By looking at different cultural priorities, the teams solidify their understanding of how culture operates in the research question at hand. Overall, the team increases their clarity about how culture manifests in a narrative—as expectations, priorities, values, motivations, and goals. We confirm our understanding and locate exemplars for the quotations that help demonstrate the shared, distinct, and shared but nuanced phenomena in the meeting.

Research Exemplar

The exemplar provided here comes from an international study that used the same methods to examine trauma recovery for women who have experienced gender-based violence in several countries (MiStory: Multicultural Study of Trauma Recovery), using data from the American and the Irish samples ( Sinko et al., 2019 ). This study used the Clinical Ethnographic Narrative Interview (CENI) to collect trauma recovery data in both the Irish and American samples by study staff who resided in both locations. The CENI is a semi-structured interview consisting of a series of activities to understand one’s social support and conflict, physical feelings and emotions, and processing their distress experiences. The CENI was developed by the first author for an NIMH-funded research study aimed at understanding the cultural influences of depression experience ( Saint Arnault, 2017 , 2018a ; Saint Arnault & Shimabukuro, 2012 ), but has since been adapted to study trauma recovery.

Participants in both countries were over 18 years. American women were recruited from a university health research portal designed to connect individuals who utilize the university health care system with research opportunities. Irish women were sampled from GBV services in Ireland. All women completed informed consent approved by the University of Michigan Institutional Review Board (HUM00091662), and all interviews were conducted by research staff trained in the same CENI interview method. We used a modified grounded theory analysis to analyze the data ( Glaser & Strauss, 1967 ). For this illustration of our comparative method, we focus on conducting the analyses’ cultural comparison component.

The research question that guided the analysis in this study presented here was: “What is the meaning of healing for women recovering from gender-based violence?” Codes were developed based on participant healing goals and objectives and survivor’s perspectives of what the healing process entailed. ATLAS. ti qualitative software was used for data management and analysis ( Muhr, 2006 ). An audit trail using personal, theoretical, and analytic memos was maintained. The first author reviewed codes every other week, and the research team regularly discussed coding concepts to verify accuracy.

To carry out the comparison analysis, we convened a reconciliation meeting. The researchers and the lead author examined quotations for the shared codes to affirm that they belonged to the same phenomenological domain. Because the codes were identified and defined by different researchers, we also examined the code definitions and created new definitions (if necessary) that accurately represented the shared phenomenon. We purposefully selected quotations that exemplified the shared theme and made notes about the culture’s unique cultural perspective related to the research question. Shared subthemes for the American and Irish women were finding strength, regaining control, and feeling competent. This analysis also revealed two “hypothetically unshared” themes: regaining identity (for the American sample) and feeling like a capable mother (for the Irish sample).

Next, a hypothesis testing analysis round was initiated for the possibly culturally distinct themes. To do that, each researcher took the new theme (the Irish took the American theme of regaining identity, and the American group took the Irish theme of feeling like a capable mother). Each team re-coded their dataset using these new, hypothetically culturally distinct themes. After analysis using the new themes, the reconciliation group was reconvened. This second round of analysis found that while the Irish mentioned the theme of identity, the frequencies were comparatively low (22 for the Americans and three for the Irish). The Americans mentioned the motherhood theme but had comparatively low frequencies (13 for the Americans and 45 for the Irish). Also, while the American women who were mothers mentioned their motherhood role, the emphasis was entirely different. This analysis re-confirmed that each of these themes represented a distinct cultural emphasis and were not shared.

Finally, we held the metanarrative meeting. In that meeting, we examined the cultural aspects of the shared themes. For example, the emphasis on identity in the Americans, while sometimes including motherhood, was primarily about developing a personal self that was satisfying and complex. The American sample described their identity as emerging from their occupations, education, and personal goals. Often this was described as extending beyond family roles and was often described as a personal achievement. This cultural emphasis on a person’s identity was described as a source of strength, giving them avenues to exert their independence through personal control or competence. The Irish women evaluated their strength, control, and competence in terms of how well they could carry out their central role as mothers. Independence was framed as perhaps hoped for in the future, but competence as a mother was valued as a primary source of personal acheivement and strength.

Discussion and Conclusions

There is a critical need to examine shared phenomenon from a cross-cultural perspective. We think that this deep dive into culture in narrative gives us a remarkable window into how culture shapes meaning, identity, and behavior. This kind of analysis also has the practical application of informing interventions that require understanding meaning, which is central in social services, public health, psychology, and nursing practice. Moreover, comparing qualitative data systematically has been limited by notions that qualitative data must focus primarily on what is culturally and socially specific. While this is a valuable enterprise, this paper emphasizes the possibility that, if researchers use the same methods, the same instruments, and comparative samples, they may be able to link contexts, meanings, and behaviors for diverse peoples across cultures. This method moves the science forward by locating aspects of a specific group that might be generalizable while also discovering what is indeed culturally specific. Furthermore, we believe that this technique can help research teams challenge their own biases and ideals by explicitly opening up cross-cultural dialogues about shared and specific phenomenon, decreasing the privilege of specific models or ideals, such as the dominance of western mental health models ( Kirmayer & Pedersen, 2014 ), while also investigating what is shared.

In this research method, a hypothesis testing framework was used to examine whether phenomena are genuinely distinct. This perspective can add to the variety of existing techniques that qualitative researchers use to minimize bias and ensure rigor, trustworthiness, and integrity ( Tracy, 2010 ). Approaches to decreasing bias in qualitative analysis includes accounting for personal biases, transparency in procedures and interpretations, meticulous record keeping (such as audit trails and bracketing), rich verbatim descriptions of participants’ accounts, working with others to reduce research bias, and respondent validation, among others ( Noble & Smith, 2015 ). The hypothesis generation and constant comparison approachs are best articulated in grounded theory ( Glaser & Strauss, 1967 ). This method explicitly seeks out similarities and differences across accounts to ensure that different perspectives are represented. When differences are found, the difference is deemed hypothetical, and steps are taken to confirm or refute this possible difference. In grounded theory, the researcher might use additional samples to confirm or refute the hypotheses, such as the use of theoretical sampling. We propose adding the systematic application of the “hypothetically unshared codes” to different samples, searching for references to that phenomenon in the other group. In this case, the researchers’ challenge is to establish what criterion they will use to accept or reject the hypothesis that the phenomenon is culturally specific.

For example, researchers can compare the frequencies of the phenomenon in each sample. Another possibility is to explore the emphasis placed on the phenomena in each culture. Still another criterion might be, not so much “ Is it present? ” but, rather, “ Does it mean the same thing? ” The technique described here used all three of these to explore each phenomenon from various angles before making a conclusion. Furthermore, the metanarrative analysis allows us to explore the meaning aspect of concepts holistically. This metanarrative allows researchers to combine what is shared and unshared together, making sense of the differences and how they acted to influence our research question.

Researchers can become wedded to their analytic models and findings. After all, they are saturated in their data and have “lived” with these narrator’s stories for months. The strategy proposed here requires the researchers to lift themselves out of their project, looking at them from another level, and then go back into their analysis from this different perspective. The moderators who facilitate these reconciliation meetings need complex skills to ensure success.

Comparison requires researchers need to listen to the researchers and the participants from both cultures at several levels at the same time. Research directors need to help the researchers from each project think differently about their concepts while remaining entirely faithful to the participants in each culture. Another hidden aspect in reconciliation meetings in this method might be researcher-level differences that can influence cross-cultural analysis, such as various levels of experience with analysis, differential levels of status (students of different levels, or faculty of different ranks), gender roles, and cultural communication style differences. Moderators need to be vigilant to all these dynamics, and the concepts under discussion and the comparison process, making sure all perspectives are heard. Finally, this CENAM method is facilitated by the front-end work of precisely crafting a shared research question. To the extent that all researchers are looking for the same thing, despite the diversity of their samples and contexts and cultural meanings, the team can explore similarities and differences without debating the goal of the overall analysis.

The metanarrative analysis can be an especially instructive undertaking because it aims to interpret how shared phenomenon relates to that which is unique. Using the discoveries made while examining the culturally unique phenomena, the researchers revisit their shared themes, often seeing more clearly how, even though a concept was shared, it was culturally nuanced. It is critical to tell this complex story clearly within the limits of a conventional research article when writing up comparison results. The metanarrative allows the research teams to bring the shared, distinct, and culturally nuanced stories to life in a short manuscript.

In cultural research, interview data is transcribed and often translated. Hanks et al., writing from the field of linguistics, argue that a goal of understanding culture through language involves defining the exact meaning of words within their cultural frame and explicating that choice as one of many possible alternative translations for what is most natural correspondence to the translation language ( Hanks & Severi, 2014 ). Moreover, the translation should document usage and metalinguistic commentaries about the context ( Quine, 2013 ). These issues are also central to comparative ethnography in general and the CENAM specifically. The CENAM relies on this critical and precise engagement with language to illuminate similarities and differences in meaning. Therefore, from a procedural perspective, we recommend that researchers use shared, rigorous transcription and translation protocols that systematically help preserve cultural connotations, idioms, and meanings. Attending to cultural meaning requires specific attention to this at the transcription and translation stage, and this prepatory work allows research teams to speak about cultural values and beliefs knowledgeably and with accuracy in the database. However, sometimes people are blind to their own culture, and membership within a community does not necessarily ensure cultural insight ( Morse, 1990 ). The additional layers of hypotheses testing and metanarrative processes can also increase qualitative analysis rigor, along with member-checking and audit trails.

Literature exists about comparative ethnography ( George, 2007 ; Howe, 2005 ; Kingfisher & Goldsmith, 2001 ; Simmons & Smith, 2019 ), however very few explain the procedural considerations or practical steps. Like Schnegg (2014) , Abramson and Gong (2020) focus on the processes that inhibit the comparison of ethnographic data. They document the plethora of ways that the ethnographic data can be collected and the varieties of “units of analysis” from individuals to groups, communities, and societies. They argue that comparative ethnography relies on shared agreements on the what , the how , and the goals of the research. Primary among them is the notion that comparative cultural analysis rests on collecting comparable data. We concur and suggest that interviewing materials and instruments must also be carefully analyzed to ensure that they do not introduce biases, such as the cultural beliefs about the phenomenon embedded in the questions or the translation of the questions. A careful translation of the interview protocol like the one described above, and interviewer training must ensure that investigators carry out the protocols with similar integrity and fidelity.

Another consideration is that comparative ethnography can be time-consuming and resource intensive. It is usually impractical for single investigators to engage with multiple field sites or organizations ( Simmons & Smith, 2019 ). This constraint leads to the analytic challenge of teams of multi-site researchers from the various comparator sites to select the comparative frame, or as Schnegg (2014) calls it, comparable dimensions. First, researchers need to share definitions about who belongs within the analytic frame and the larger team needs to agree that the participants from all sites share some experience, condition, or situation. The comparative frame for ethnographic narrative interview analysis could examine diversity in cultural contexts, subcultural diversity, differential exposure to discrimination and prejudice, diversity of economic positions, prior histories, and other differences revealed in a narrative. The data that emerges must be fundamentally similar for comparison, so the interview must ask the same questions and allow participants to describe all the essential aspects relevant to the phenomenon of interest.

To compare narrative data, the researchers need to ask the same research question, using the same instruments. Possible questions in our research were: “What are the social and internal barriers and facilitators for seeking healing after experiencing gender-based violence?” Another research question might be: “What is the meaning of violence in the family for women who have experienced domestic violence? Another question could be: “Is there a difference in the meaning of healing after domestic violence between women who have, and who have not, experienced violence as a child?” Then, using ethnographic narrative interviewing allows both cross-group and within-group comparisons, allowing a complex analytic design. If the research uses the same unbiased interviewing procedures, has high fidelity training, and the samples are with people who share a collective experience, the task of comparative qualitative analysis can be undertaken to answer a shared research question.

Comparative ethnography in nursing has been primarily cast under the rubric of “multi-sited ethnography” ( Molloy et al., 2017 ). Multi-sited ethnography is described as a method of contextualizing multi-sited social phenomena, allowing nursing researchers to examine social phenomena produced in different geographic locations simultaneously. As proposed by Marcus (2015) , multi-sited ethnography initially relied on immersive fieldwork. However, many recent multi-site ethnographies examine and contextualize care delivery in various organizations ( Côté-Boileau et al., 2020 ; Lafferty et al., 2020 ; Leighton et al., 2020 ; van Belle et al., 2020 ).

These multi-sited ethnographies tend to use a multi-site case study approach ( Jenkins et al., 2018 ), which, in contrast to immersive ethnography, tends to collapse phenomenon to allow for comparison. Like Jenkins et al., we agree that there is a paucity of analytical guidance to support researchers in these approaches. The CENAM and other emerging analytic guides seek to fill this critical analysis gap, allowing researchers to systematically craft research questions and engage with samples that are comparable, helping nurse researchers to understand how context and culture, internalized into the self, ultimately shapes how one responds to and makes meaning out of illness, health, and recovery. This analytic method can give additional analytical insights to any given narrative and ultimately help shed light on potential commonalities (and distinctions) in the human experience.

The process proposed here provides a valuable opportunity to understand the sociocultural nuances in our research questions, allowing nurses to intervene for people in a way that meets their unique cultural worldviews. While careful consideration is needed to ensure this analytic process’s integrity, ultimately, an organized and thoughtful research team should be able to execute this method, giving them a richer contextual understanding of their qualitative data.

We hope that the understanding gained through this methodology encourages creating culturally tailored, person-centered interventions that address an individual’s goals and desires, framed within their sociocultural context.

Author Biographies

Denise Saint Arnault , PhD, RN, FAAN is a professor at the University of Michigan School of Nursing, Ann Arbor MI, USA.

Laura Sinko PhD, RN, CCTS-Iis an assistant professor at Temple University, Philadephia, PA, USA.

Declaration of Conflicting Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding: The authors received no financial support for the research, authorship, and/or publication of this article.

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• Research article
• Open access
• Published: 15 April 2024

What is quality in long covid care? Lessons from a national quality improvement collaborative and multi-site ethnography

• Trisha Greenhalgh   ORCID: orcid.org/0000-0003-2369-8088 1 ,
• Julie L. Darbyshire 1 ,
• Cassie Lee 2 ,
• Emma Ladds 1 &
• Jenny Ceolta-Smith 3  

BMC Medicine volume  22 , Article number:  159 ( 2024 ) Cite this article

Metrics details

Long covid (post covid-19 condition) is a complex condition with diverse manifestations, uncertain prognosis and wide variation in current approaches to management. There have been calls for formal quality standards to reduce a so-called “postcode lottery” of care. The original aim of this study—to examine the nature of quality in long covid care and reduce unwarranted variation in services—evolved to focus on examining the reasons why standardizing care was so challenging in this condition.

In 2021–2023, we ran a quality improvement collaborative across 10 UK sites. The dataset reported here was mostly but not entirely qualitative. It included data on the origins and current context of each clinic, interviews with staff and patients, and ethnographic observations at 13 clinics (50 consultations) and 45 multidisciplinary team (MDT) meetings (244 patient cases). Data collection and analysis were informed by relevant lenses from clinical care (e.g. evidence-based guidelines), improvement science (e.g. quality improvement cycles) and philosophy of knowledge.

Participating clinics made progress towards standardizing assessment and management in some topics; some variation remained but this could usually be explained. Clinics had different histories and path dependencies, occupied a different place in their healthcare ecosystem and served a varied caseload including a high proportion of patients with comorbidities. A key mechanism for achieving high-quality long covid care was when local MDTs deliberated on unusual, complex or challenging cases for which evidence-based guidelines provided no easy answers. In such cases, collective learning occurred through idiographic (case-based) reasoning , in which practitioners build lessons from the particular to the general. This contrasts with the nomothetic reasoning implicit in evidence-based guidelines, in which reasoning is assumed to go from the general (e.g. findings of clinical trials) to the particular (management of individual patients).

Not all variation in long covid services is unwarranted. Largely because long covid’s manifestations are so varied and comorbidities common, generic “evidence-based” standards require much individual adaptation. In this complex condition, quality improvement resources may be productively spent supporting MDTs to optimise their case-based learning through interdisciplinary discussion. Quality assessment of a long covid service should include review of a sample of individual cases to assess how guidelines have been interpreted and personalized to meet patients’ unique needs.

Study registration

NCT05057260, ISRCTN15022307.

Peer Review reports

The term “long covid” [ 1 ] means prolonged symptoms following SARS-CoV-2 infection not explained by an alternative diagnosis [ 2 ]. It embraces the US term “post-covid conditions” (symptoms beyond 4 weeks) [ 3 ], the UK terms “ongoing symptomatic covid-19” (symptoms lasting 4–12 weeks) and “post covid-19 syndrome” (symptoms beyond 12 weeks) [ 4 ] and the World Health Organization’s “post covid-19 condition” (symptoms occurring beyond 3 months and persisting for at least 2 months) [ 5 ]. Long covid thus defined is extremely common. In UK, for example, 1.8 million of a population of 67 million met the criteria for long covid in early 2023 and 41% of these had been unwell for more than 2 years [ 6 ].

Long covid is characterized by a constellation of symptoms which may include breathlessness, fatigue, muscle and joint pain, chest pain, memory loss and impaired concentration (“brain fog”), sleep disturbance, depression, anxiety, palpitations, dizziness, gastrointestinal problems such as diarrhea, skin rashes and allergy to food or drugs [ 2 ]. These lead to difficulties with essential daily activities such as washing and dressing, impaired exercise tolerance and ability to work, and reduced quality of life [ 2 , 7 , 8 ]. Symptoms typically cluster (e.g. in different patients, long covid may be dominated by fatigue, by breathlessness or by palpitations and dizziness) [ 9 , 10 ]. Long covid may follow a fairly constant course or a relapsing and remitting one, perhaps with specific triggers [ 11 ]. Overlaps between fatigue-dominant subtypes of long covid, myalgic encephalomyelitis and chronic fatigue syndrome have been hypothesized [ 12 ] but at the time of writing remain unproven.

Long covid has been a contested condition from the outset. Whilst long-term sequelae following other coronavirus (SARS and MERS) infections were already well-documented [ 13 ], SARS-CoV-2 was originally thought to cause a short-lived respiratory illness from which the patient either died or recovered [ 14 ]. Some clinicians dismissed protracted or relapsing symptoms as due to anxiety or deconditioning, especially if the patient had not had laboratory-confirmed covid-19. People with long covid got together in online groups and shared accounts of their symptoms and experiences of such “gaslighting” in their healthcare encounters [ 15 , 16 ]. Some groups conducted surveys on their members, documenting the wide range of symptoms listed in the previous paragraph and showing that whilst long covid is more commonly a sequel to severe acute covid-19, it can (rarely) follow a mild or even asymptomatic acute infection [ 17 ].

Early publications on long covid depicted a post-pneumonia syndrome which primarily affected patients who had been hospitalized (and sometimes ventilated) [ 18 , 19 ]. Later, covid-19 was recognized to be a multi-organ inflammatory condition (the pneumonia, for example, was reclassified as pneumonitis ) and its long-term sequelae attributed to a combination of viral persistence, dysregulated immune response (including auto-immunity), endothelial dysfunction and immuno-thrombosis, leading to damage to the lining of small blood vessels and (thence) interference with transfer of oxygen and nutrients to vital organs [ 20 , 21 , 22 , 23 , 24 ]. But most such studies were highly specialized, laboratory-based and written primarily for an audience of fellow laboratory researchers. Despite demonstrating mean differences in a number of metabolic variables, they failed to identify a reliable biomarker that could be used routinely in the clinic to rule a diagnosis of long covid in or out. Whilst the evidence base from laboratory studies grew rapidly, it had little influence on clinical management—partly because most long covid clinics had been set up with impressive speed by front-line clinical teams to address an immediate crisis, with little or no input from immunologists, virologists or metabolic specialists [ 25 ].

Studies of the patient experience revealed wide geographical variation in whether any long covid services were provided and (if they were) which patients were eligible for these and what tests and treatments were available [ 26 ]. An interim UK clinical guideline for long covid had been produced at speed and published in December 2020 [ 27 ], but it was uncertain about diagnostic criteria, investigations, treatments and prognosis. Early policy recommendations for long covid services in England, based on wide consultation across UK, had proposed a tiered service with “tier 1” being supported self-management, “tier 2” generalist assessment and management in primary care, “tier 3” specialist rehabilitation or respiratory follow-up with oversight from a consultant physician and “tier 4” tertiary care for patients with complications or complex needs [ 28 ]. In 2021, ring-fenced funding was allocated to establish 90 multidisciplinary long covid clinics in England [ 29 ]; some clinics were also set up with local funding in Scotland and Wales. These clinics varied widely in eligibility criteria, referral pathways, staffing mix (some had no doctors at all) and investigations and treatments offered. A further policy document on improving long covid services was published in 2022 [ 30 ]; it recommended that specialist long covid clinics should continue, though the long-term funding of these services remains uncertain [ 31 ]. To build the evidence base for delivering long covid services, major programs of publicly funded research were commenced in both UK [ 32 ] and USA [ 33 ].

In short, at the time this study began (late 2021), there appeared to be much scope for a program of quality improvement which would capture fast-emerging research findings, establish evidence-based standards and ensure these were rapidly disseminated and consistently adopted across both specialist long covid services and in primary care.

Quality improvement collaboratives

The quality improvement movement in healthcare was born in the early 1980s when clinicians and policymakers US and UK [ 34 , 35 , 36 , 37 ] began to draw on insights from outside the sector [ 38 , 39 , 40 ]. Adapting a total quality management approach that had previously transformed the Japanese car industry, they sought to improve efficiency, reduce waste, shift to treating the upstream causes of problems (hence preventing disease) and help all services approach the standards of excellence achieved by the best. They developed an approach based on (a) understanding healthcare as a complex system (especially its key interdependencies and workflows), (b) analysing and addressing variation within the system, (c) learning continuously from real-world data and (d) developing leaders who could motivate people and help them change structures and processes [ 41 , 42 , 43 , 44 ].

Quality improvement collaboratives (originally termed “breakthrough collaboratives” [ 45 ]), in which representatives from different healthcare organizations come together to address a common problem, identify best practice, set goals, share data and initiate and evaluate improvement efforts [ 46 ], are one model used to deliver system-wide quality improvement. It is widely assumed that these collaboratives work because—and to the extent that—they identify, interpret and implement high-quality evidence (e.g. from randomized controlled trials).

Research on why quality improvement collaboratives succeed or fail has produced the following list of critical success factors: taking a whole-system approach, selecting a topic and goal that fits with organizations’ priorities, fostering a culture of quality improvement (e.g. that quality is everyone’s job), engagement of everyone (including the multidisciplinary clinical team, managers, patients and families) in the improvement effort, clearly defining people’s roles and contribution, engaging people in preliminary groundwork, providing organizational-level support (e.g. chief executive endorsement, protected staff time, training and support for teams, resources, quality-focused human resource practices, external facilitation if needed), training in specific quality improvement techniques (e.g. plan-do-study-act cycle), attending to the human dimension (including cultivating trust and working to ensure shared vision and buy-in), continuously generating reliable data on both processes (e.g. current practice) and outcomes (clinical, satisfaction) and a “learning system” infrastructure in which knowledge that is generated feeds into individual, team and organizational learning [ 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 ].

The quality improvement collaborative approach has delivered many successes but it has been criticized at a theoretical level for over-simplifying the social science of human motivation and behaviour and for adopting a somewhat mechanical approach to the study of complex systems [ 55 , 56 ]. Adaptations of the original quality improvement methodology (e.g. from Sweden [ 57 , 58 ]) have placed greater emphasis on human values and meaning-making, on the grounds that reducing the complexities of a system-wide quality improvement effort to a set of abstract and generic “success factors” will miss unique aspects of the case such as historical path dependencies, personalities, framing and meaning-making and micropolitics [ 59 ].

Perhaps this explains why, when the abovementioned factors are met, a quality improvement collaborative’s success is more likely but is not guaranteed, as a systematic review demonstrated [ 60 ]. Some well-designed and well-resourced collaboratives addressing clear knowledge gaps produced few or no sustained changes in key outcome measures [ 49 , 53 , 60 , 61 , 62 ]. To identify why this might be, a detailed understanding of a service’s history, current challenges and contextual constraints is needed. This explains our decision, part-way through the study reported here, to collect rich contextual data on participating sites so as to better explain success or failure of our own collaborative.

Warranted and unwarranted variation in clinical practice

A generation ago, Wennberg described most variation in clinical practice as “unwarranted” (which he defined as variation in the utilization of health care services that cannot be explained by variation in patient illness or patient preferences) [ 63 ]. Others coined the term “postcode lottery” to depict how such variation allegedly impacted on health outcomes [ 64 ]. Wennberg and colleagues’ Atlas of Variation , introduced in 1999 [ 65 ], and its UK equivalent, introduced in 2010 [ 66 ], described wide regional differences in the rates of procedures from arthroscopy to hysterectomy, and were used to prompt services to identify and address examples of under-treatment, mis-treatment and over-treatment. Numerous similar initiatives, mostly based on hospital activity statistics, have been introduced around the world [ 66 , 67 , 68 , 69 ]. Sutherland and Levesque’s proposed framework for analysing variation, for example, has three domains: capacity (broadly, whether sufficient resources are allocated at organizational level and whether individuals have the time and headspace to get involved), evidence (the extent to which evidence-based guidelines exist and are followed), and agency (e.g. whether clinicians are engaged with the issue and the effect of patient choice) [ 70 ].

Whilst it is clearly a good idea to identify unwarranted variation in practice, it is also important to acknowledge that variation can be warranted . The very act of measuring and describing variation carries great rhetorical power, since revealing geographical variation in any chosen metric effectively frames this as a problem with a conceptually simple solution (reducing variation) that will appeal to both politicians and the public [ 71 ]. The temptation to expose variation (e.g. via visualizations such as maps) and address it in mechanistic ways should be resisted until we have fully understood the reasons why it exists, which may include perverse incentives, insufficient opportunities to discuss cases with colleagues, weak or absent feedback on practice, unclear decision processes, contested definitions of appropriate care and professional challenges to guidelines [ 72 ].

Research question, aims and objectives

Research question.

What is quality in long covid care and how can it best be achieved?

To identify best practice and reduce unwarranted variation in UK long covid services.

To explain aspects of variation in long covid services that are or may be warranted.

Our original objectives were to:

Establish a quality improvement collaborative for 10 long covid clinics across UK.

Use quality improvement methods in collaboration with patients and clinic staff to prioritize aspects of care to improve. For each priority topic, identify best (evidence-informed) clinical practice, measure performance in each clinic, compare performance with a best practice benchmark and improve performance.

Produce organizational case studies of participating long covid clinics to explain their origins, evolution, leadership, ethos, population served, patient pathways and place in the wider healthcare ecosystem.

Examine these case studies to explain variation in practice, especially in topics where the quality improvement cycle proves difficult to follow or has limited impact.

The LOCOMOTION study

LOCOMOTION (LOng COvid Multidisciplinary consortium Optimising Treatments and services across the NHS) was a 30-month multi-site case study of 10 long covid clinics (8 in England, 1 in Wales and 1 in Scotland), beginning in 2021, which sought to optimise long covid care. Each clinic offered multidisciplinary care to patients referred from primary or secondary care (and, in some cases, self-referred), and held regular multidisciplinary team (MDT) meetings, mostly online via Microsoft Teams, to discuss cases. A study protocol for LOCOMOTION, with details of ethical approvals, management, governance and patient involvement has been published [ 25 ]. The three main work packages addressed quality improvement, technology-supported patient self-management and phenotyping and symptom clustering. This paper reports on the first work package, focusing mainly on qualitative findings.

Setting up the quality improvement collaborative

We broadly followed standard methodology for “breakthrough” quality improvement collaboratives [ 44 , 45 ], with two exceptions. First, because of geographical distance, continuing pandemic precautions and developments in videoconferencing technology, meetings were held online. Second, unlike in the original breakthrough model, patients were included in the collaborative, reflecting the cultural change towards patient partnerships since the model was originally proposed 40 years ago.

Each site appointed a clinical research fellow (doctor, nurse or allied health professional) funded partly by the LOCOMOTION study and partly with clinical sessions; some were existing staff who were backfilled to take on a research role whilst others were new appointments. The quality improvement meetings were held approximately every 8 weeks on Microsoft Teams and lasted about 2 h; there was an agenda and a chair, and meetings were recorded with consent. The clinical research fellow from each clinic attended, sometimes joined by the clinical lead for that site. In the initial meeting, the group proposed and prioritized topics before merging their consensus with the list of priority topics generated separately by patients (there was much overlap but also some differences).

In subsequent meetings, participants attempted to reach consensus on how to define, measure and achieve quality for each priority topic in turn, implement this approach in their own clinic and monitor its impact. Clinical leads prepared illustrative clinical cases and summaries of the research evidence, which they presented using Microsoft Powerpoint; the group then worked towards consensus on the implications for practice through general discussion. Clinical research fellows assisted with literature searches, collected baseline data from their own clinic, prepared and presented anonymized case examples, and contributed to collaborative goal-setting for improvement. Progress on each topic was reviewed at a later meeting after an agreed interval.

An additional element of this work package was semi-structured interviews with 29 patients, recruited from 9 of the 10 participating sites, about their clinic experiences with a view to feeding into service improvement (in the other site, no patient volunteered).

Our patient advisory group initially met separately from the quality improvement collaborative. They designed a short survey of current practice and sent it to each clinic; the results of this informed a prioritization exercise for topics where they considered change was needed. The patient-generated list was tabled at the quality improvement collaborative discussions, but patients were understandably keen to join these discussions directly. After about 9 months, some patient advisory group members joined the regular collaborative meetings. This dynamic was not without its tensions, since sharing performance data requires trust and there were some concerns about confidentiality when real patient cases were discussed with other patients present.

How evidence-informed quality targets were set

At the time the study began, there were no published large-scale randomized controlled trials of any interventions for long covid. We therefore followed a model used successfully in other quality improvement efforts where research evidence was limited or absent or it did not translate unambiguously into models for current services. In such circumstances, the best evidence may be custom and practice in the best-performing units. The quality improvement effort becomes oriented to what one group of researchers called “potentially better practices”—that is, practices that are “developed through analysis of the processes of care, literature review, and site visits” (page 14) [ 73 ]. The idea was that facilitated discussion among clinical teams, drawing on published research where available but also incorporating clinical experience, established practice and systematic analysis of performance data across participating clinics would surface these “potentially better practices”—an approach which, though not formally tested in controlled trials, appears to be associated with improved outcomes [ 46 , 73 ].

Adding an ethnographic component

Following limited progress made on some topics that had been designated high priority, we interviewed all 10 clinical research fellows (either individually or, in two cases, with a senior clinician present) and 18 other clinic staff (five individually plus two groups of 5 and 8), along with additional informal discussions, to explore the challenges of implementing the changes that had been agreed. These interviews were not audiotaped but detailed notes were made and typed up immediately afterwards. It became evident that some aspects of what the collaborative had deemed “evidence-informed” care were contested by front-line clinic staff, perceived as irrelevant to the service they were delivering, or considered impossible to implement. To unpack these issues further, the research protocol was amended to include an ethnographic component.

TG and EL (academic general practitioners) and JLD (a qualitative researcher with a PhD in the patient experience) attended a total of 45 MDT meetings in participating clinics (mostly online or hybrid). Staff were informed in advance that there would be an observer present; nobody objected. We noted brief demographic and clinical details of cases discussed (but no identifying data), dilemmas and uncertainties on which discussions focused, and how different staff members contributed.

TG made 13 in-person visits to participating long covid clinics. Staff were notified in advance; all were happy to be observed. Visits lasted between 5 and 8 h (54 h in total). We observed support staff booking patients in and processing requests and referrals, and shadowed different clinical staff in turn as they saw patients. Patients were informed of our presence and its purpose beforehand and given the opportunity to decline (three of 53 patients approached did). We discussed aspects of each case with the clinician after the patient left. When invited, we took breaks with staff and used these as an opportunity to ask them informally what it was like working in the clinic.

Ethnographic observation, analysis and reporting was geared to generating a rich interpretive account of the clinical, operational and interpersonal features of each clinic—what Van Maanen calls an “impressionist tales” [ 74 ]. Our work was also guided by the principles set out by Golden-Biddle and Locke, namely authenticity (spending time in the field and basing interpretations on these direct observations), plausibility (creating a plausible account through rich persuasive description) and criticality (e.g. reflexively examining our own assumptions) [ 75 ]. Our collection and analysis of qualitative data was informed by our own professional backgrounds (two general practitioners, one physical therapist, two non-clinicians).

In both MDTs and clinics, we took contemporaneous notes by hand and typed these up immediately afterwards.

Data management and analysis

Typed interview notes and field notes from clinics were collated in a set of Word documents, one for each clinic attended. They were analysed thematically [ 76 ] with attention to the literature on quality improvement and variation (see “ Background ”). Interim summaries were prepared on each clinic, setting out the narrative of how it had been established, its ethos and leadership, setting and staffing, population served and key links with other parts of the local healthcare ecosystem.

Minutes and field notes from the quality improvement collaborative meetings were summarized topic by topic, including initial data collected by the researchers-in-residence, improvement actions taken (or attempted) in that clinic, and any follow-up data shared. Progress or lack of it was interpreted in relation to the contextual case summary for that clinic.

Patient cases seen in clinic, and those discussed by MDTs, were summarized as brief case narratives in Word documents. Using the constant comparative method [ 77 ], we produced an initial synthesis of the clinical picture and principles of management based on the first 10 patient cases seen, and refined this as each additional case was added. Demographic and brief clinical and social details were also logged on Excel spreadsheets. When writing up clinical cases, we used the technique of composite case construction (in which we drew on several actual cases to generate a fictitious one, thereby protecting anonymity whilst preserving key empirical findings [ 78 ]); any names reported in this paper are pseudonyms.

Member checking

A summary was prepared for each clinic, including a narrative of the clinic’s own history and a summary of key quality issues raised across the ten clinics. These summaries included examples from real cases in our dataset. These were shared with the clinical research fellow and a senior clinician from the clinic, and amended in response to feedback. We also shared these summaries with representatives from the patient advisory group.

Overview of dataset

This study generated three complementary datasets. First, the video recordings, minutes, and field notes of 12 quality improvement collaborative meetings, along with the evidence summaries prepared for these meetings and clinic summaries (e.g. descriptions of current practice, audits) submitted by the clinical research fellows. This dataset illustrated wide variation in practice, and (in many topics) gaps or ambiguities in the evidence base.

Second, interviews with staff ( n  = 30) and patients ( n  = 29) from the clinics, along with ethnographic field notes (approximately 100 pages) from 13 in-person clinic visits (54 h), including notes on 50 patient consultations (40 face-to-face, 6 telephone, 4 video). This dataset illustrated the heterogeneity among the ten participating clinics.

Third, field notes (approximately 100 pages), including discussions on 244 clinical cases from the 45 MDT meetings (49 h) that we observed. This dataset revealed further similarities and contrasts among clinics in how patients were managed. In particular, it illustrated how, for the complex patients whose cases were presented at these meetings, teams made sense of, and planned for, each case through multidisciplinary dialogue. This dialogue typically began with one staff member presenting a detailed clinical history along with a narrative of how it had affected the patient’s life and what was at stake for them (e.g. job loss), after which professionals from various backgrounds (nursing, physical therapy, occupational therapy, psychology, dietetics, and different medical specialties) joined in a discussion about what to do.

The ten participating sites are summarized in Table  1 .

In the next two sections, we explore two issues—difficulty defining best practice and the heterogeneous nature of the clinics—that were key to explaining why quality, when pursued in a 10-site collaborative, proved elusive. We then briefly summarize patients’ accounts of their experience in the clinics and give three illustrative examples of the elusiveness of quality improvement using selected topics that were prioritized in our collaborative: outcome measures, investigation of palpitations and management of fatigue. In the final section of the results, we describe how MDT deliberations proved crucial for local quality improvement. Further detail on clinical priority topics will be presented in a separate paper.

“Best practice” in long covid: uncertainty and conflict

The study period (September 2021 to December 2023) corresponded with an exponential increase in published research on long covid. Despite this, the quality improvement collaborative found few unambiguous recommendations for practice. This gap between what the research literature offered and what clinical practice needed was partly ontological (relating what long covid is ). One major bone of contention between patients and clinicians (also evident in discussions with our patient advisory group), for example, was how far (and in whom) clinicians should look for and attempt to treat the various metabolic abnormalities that had been documented in laboratory research studies. The literature on this topic was extensive but conflicting [ 20 , 21 , 22 , 23 , 24 , 79 , 80 , 81 , 82 ]; it was heavy on biological detail but light on clinical application.

Patients were often aware of particular studies that appeared to offer plausible molecular or cellular explanations for symptom clusters along with a drug (often repurposed and off-label) whose mechanism of action appeared to be a good fit with the metabolic chain of causation. In one clinic, for example, we were shown an email exchange between a patient (not medically qualified) and a consultant, in which the patient asked them to reconsider their decision not to prescribe low-dose naltrexone, an opioid receptor antagonist with anti-inflammatory properties. The request included a copy of a peer-reviewed academic paper describing a small, uncontrolled pre-post study (i.e. a weak study design) in which this drug appeared to improve symptoms and functional performance in patients with long covid, as well as a mechanistic argument explaining why the patient felt this drug was a plausible choice in their own case.

This patient’s clinician, in common with most clinicians delivering front-line long covid services, considered that the evidence for such mechanism-based therapies was weak. Clinicians generally felt that this evidence, whilst promising, did not yet support routine measurement of clotting factors, antibodies, immune cells or other biomarkers or the prescription of mechanism-based therapies such as antivirals, anti-inflammatories or anticoagulants. Low-dose naltroxone, for example, is currently being tested in at least one randomized controlled trial (see National Clinical Trials Registry NCT05430152), which had not reported at the time of our observations.

Another challenge to defining best practice was the oft-repeated phrase that long covid is a “diagnosis by exclusion”, but the high prevalence of comorbidities meant that the “pure” long covid patient untainted by other potential explanations for their symptoms was a textbook ideal. In one MDT, for example, we observed a discussion about a patient who had had both swab-positive covid-19 and erythema migrans (a sign of Lyme disease) in the weeks before developing fatigue, yet local diagnostic criteria for each condition required the other to be excluded.

The logic of management in most participating clinics was pragmatic: prompt multidisciplinary assessment and treatment with an emphasis on obtaining a detailed clinical history (including premorbid health status), excluding serious complications (“red flags”), managing specific symptom clusters (for example, physical therapy for breathing pattern disorder), treating comorbidities (for example, anaemia, diabetes or menopause) and supporting whole-person rehabilitation [ 7 , 83 ]. The evidentiary questions raised in MDT discussions (which did not include patients) addressed the practicalities of the rehabilitation model (for example, whether cognitive therapy for neurocognitive complications is as effective when delivered online as it is when delivered in-person) rather than the molecular or cellular mechanisms of disease. For example, the question of whether patients with neurocognitive impairment should be tested for micro-clots or treated with anticoagulants never came up in the MDTs we observed, though we did visit a tertiary referral clinic (the tier 4 clinic in site H), whose lead clinician had a research interest in inflammatory coagulopathies and offered such tests to selected patients.

Because long covid typically produces dozens of symptoms that tend to be uniquely patterned in each patient, the uncertainties on which MDT discussions turned were rarely about general evidence of the kind that might be found in a guideline (e.g. how should fatigue be managed?). Rather they concerned particular case-based clinical decisions (e.g. how should this patient’s fatigue be managed, given the specifics of this case?). An example from our field notes illustrates this:

Physical therapist presents the case of a 39-year-old woman who works as a cleaner on an overnight ferry. Has had long covid for 2 years. Main symptoms are shortness of breath and possible anxiety attacks, especially when at work. She has had a course of physical therapy to teach diaphragmatic breathing but has found that focusing on her breathing makes her more anxious. Patient has to do a lot of bending in her job (e.g. cleaning toilets and under seats), which makes her dizzy, but Active Stand Test was normal. She also has very mild tricuspid incompetence [someone reads out a cardiology report—not hemodynamically significant].

Rehabilitation guidelines (e.g. WHO) recommend phased return to work (e.g. with reduced hours) and frequent breaks. “Tricky!” says someone. The job is intense and busy, and the patient can’t afford not to work. Discussion on whether all her symptoms can be attributed to tension and anxiety. Physical therapist who runs the breathing group says, “No, it’s long covid”, and describes severe initial covid-19 episode and results of serial chest X-rays which showed gradual clearing of ground glass shadows. Team discussion centers on how to negotiate reduced working hours in this particular job, given the overnight ferry shifts. --MDT discussion, Site D

This example raises important considerations about the nature of clinical knowledge in long covid. We return to it in the final section of the “ Results ” and in the “ Discussion ”.

Long covid clinics: a heterogeneous context for quality improvement

Most participating clinics had been established in mid-2020 to follow up patients who had been hospitalized (and perhaps ventilated) for severe acute covid-19. As mass vaccination reduced the severity of acute covid-19 for most people, the patient population in all clinics progressively shifted to include fewer “post-ICU [intensive care unit]” patients (in whom respiratory symptoms almost always dominated), and more people referred by their general practitioners or other secondary care specialties who had not been hospitalized for their acute covid-19 infection, and in whom fatigue, brain fog and palpitations were often the most troubling symptoms. Despite these similarities, the ten clinics had very different histories, geographical and material settings, staffing structures, patient pathways and case mix, as Table  1 illustrates. Below, we give more detail on three example sites.

Site C was established as a generalist “assessment-only” service by a general practitioner with an interest in infectious diseases. It is led jointly by that general practitioner and an occupational therapist, assisted by a wide range of other professionals including speech and language therapy, dietetics, clinical psychology and community-based physical therapy and occupational therapy. It has close links with a chronic fatigue service and a pain clinic that have been running in the locality for over 20 years. The clinic, which is entirely virtual (staff consult either from home or from a small side office in the community trust building), is physically located in a low-rise building on the industrial outskirts of a large town, sharing office space with various community-based health and social care services. Following a 1-h telephone consultation by one of the clinical leads, each patient is discussed at the MDT and then either discharged back to their general practitioner with a detailed management plan or referred on to one of the specialist services. This arrangement evolved to address a particular problem in this locality—that many patients with long covid were being referred by their general practitioner to multiple specialties (e.g. respiratory, neurology, fatigue), leading to a fragmented patient experience, unnecessary specialist assessments and wasteful duplication. The generalist assessment by telephone is oriented to documenting what is often a complex illness narrative (including pre-existing physical and mental comorbidities) and working with the patient to prioritize which symptoms or problems to pursue in which order.

Site E, in a well-regarded inner-city teaching hospital, had been set up in 2020 by a respiratory physician. Its initial ethos and rationale had been “respiratory follow-up”, with strong emphasis on monitoring lung damage via repeated imaging and lung function tests and in ensuring that patients received specialist physical therapy to “re-learn” efficient breathing techniques. Over time, this site has tried to accommodate a more multi-system assessment, with the introduction of a consultant-led infectious disease clinic for patients without a dominant respiratory component, reflecting the shift towards a more fatigue-predominant case mix. At the time of our fieldwork, each patient was seen in turn by a physician, psychologist, occupational therapist and respiratory physical therapist (half an hour each) before all four staff reconvened in a face-to-face MDT meeting to form a plan for each patient. But whilst a wide range of patients with diverse symptoms were discussed at these meetings, there remained a strong focus on respiratory pathology (e.g. tracking improvements in lung function and ensuring that coexisting asthma was optimally controlled).

Site F, one of the first long covid clinics in UK, was set up by a rehabilitation consultant who had been drafted to work on the ICU during the first wave of covid-19 in early 2020. He had a longstanding research interest in whole-patient rehabilitation, especially the assessment and management of chronic fatigue and pain. From the outset, clinic F was more oriented to rehabilitation, including vocational rehabilitation to help patients return to work. There was less emphasis on monitoring lung function or pursuing respiratory comorbidities. At the time of our fieldwork, clinic F offered both a community-based service (“tier 2”) led by an occupational therapist, supported by a respiratory physical therapist and psychologist, and a hospital-based service (“tier 3”) led by the rehabilitation consultant, supported by a wider MDT. Staff in both tiers emphasized that each patient needs a full physical and mental assessment and help to set and work towards achievable goals, whilst staying within safe limits so as to avoid post-exertional symptom exacerbation. Because of the research interest of the lead physician, clinic F adapted well to the growing numbers of patients with fatigue and quickly set up research studies on this cohort [ 84 ].

Details of the other seven sites are shown in Table  1 . Broadly speaking, sites B, E, G and H aligned with the “respiratory follow-up” model and sites F and I aligned with the “rehabilitation” model. Sites A and J had a high-volume, multi-tiered service whose community tier aligned with the “holistic GP assessment” model (site C above) and which also offered a hospital-based, rehabilitation-focused tier. The small service in Scotland (site D) had evolved from an initial respiratory focus to become part of the infectious diseases (ME/CFS) service; Lyme disease (another infectious disease whose sequelae include chronic fatigue) was also prevalent in this region.

The patient experience

Whilst the 10 participating clinics were very diverse in staffing, ethos and patient flows, the 29 patient interviews described remarkably consistent clinic experiences. Almost all identified the biggest problem to be the extended wait of several months before they were seen and the limited awareness (when initially referred) of what long covid clinics could provide. Some talked of how they cried with relief when they finally received an appointment. When the quality improvement collaborative was initially established, waiting times and bottlenecks were patients’ the top priority for quality improvement, and this ranking was shared by clinic staff, who were very aware of how much delays and uncertainties in assessment and treatment compounded patients’ suffering. This issue resolved to a large extent over the study period in all clinics as the referral backlog cleared and the incidence of new cases of long covid fell [ 85 ]; it will be covered in more detail in a separate publication.

Most patients in our sample were satisfied with the care they received when they were finally seen in clinic, especially how they finally felt “heard” after a clinician took a full history. They were relieved to receive affirmation of their experience, a diagnosis of what was wrong and reassurance that they were believed. They were grateful for the input of different members of the multidisciplinary teams and commented on the attentiveness, compassion and skill of allied professionals in particular (“she was wonderful, she got me breathing again”—patient BIR145 talking about a physical therapist). One or two patient participants expressed confusion about who exactly they had seen and what advice they had been given, and some did not realize that a telephone assessment had been an actual clinical consultation. A minority expressed disappointment that an expected investigation had not been ordered (one commented that they had not had any blood tests at all). Several had assumed that the help and advice from the long covid clinic would continue to be offered until they were better and were disappointed that they had been discharged after completing the various courses on offer (since their clinic had been set up as an “assessment only” service).

In the next sections, we give examples of topics raised in the quality improvement collaborative and how they were addressed.

Example quality topic 1: Outcome measures

The first topic considered by the quality improvement collaborative was how (that is, using which measures and metrics) to assess and monitor patients with long covid. In the absence of a validated biomarker, various symptom scores and quality of life scales—both generic and disease-specific—were mooted. Site F had already developed and validated a patient-reported outcome measure (PROM), the C19-YRS (Covid-19 Yorkshire Rehabilitation Scale) and used it for both research and clinical purposes [ 86 ]. It was quickly agreed that, for the purposes of generating comparative research findings across the ten clinics, the C19-YRS should be used at all sites and completed by patients three-monthly. A commercial partner produced an electronic version of this instrument and an app for patient smartphones. The quality improvement collaborative also agreed that patients should be asked to complete the EUROQOL EQ5D, a widely used generic health-related quality of life scale [ 87 ], in order to facilitate comparisons between long covid and other chronic conditions.

In retrospect, the discussions which led to the unopposed adoption of these two measures as a “quality” initiative in clinical care were somewhat aspirational. A review of progress at a subsequent quality improvement meeting revealed considerable variation among clinics, with a wide variety of measures used in different clinics to different degrees. Reasons for this variation were multiple. First, although our patient advisory group were keen that we should gather as much data as possible on the patient experience of this new condition, many clinic patients found the long questionnaires exhausting to complete due to cognitive impairment and fatigue. In addition, whilst patients were keen to answer questions on symptoms that troubled them, many had limited patience to fill out repeated surveys on symptoms that did not trouble them (“it almost felt as if I’ve not got long covid because I didn’t feel like I fit the criteria as they were laying it out”—patient SAL001). Staff assisted patients in completing the measures when needed, but this was time-consuming (up to 45 min per instrument) and burdensome for both staff and patients. In clinics where a high proportion of patients required assistance, staff time was the rate-limiting factor for how many instruments got completed. For some patients, one short instrument was the most that could be asked of them, and the clinician made a judgement on which one would be in their best interests on the day.

The second reason for variation was that the clinical diagnosis and management of particular features, complications and comorbidities of long covid required more nuance than was provided by these relatively generic instruments, and the level of detail sought varied with the specialist interest of the clinic (and the clinician). The modified C19-YRS [ 88 ], for example, contained 19 items, of which one asked about sleep quality. But if a patient had sleep difficulties, many clinicians felt that these needed to be documented in more detail—for example using the 8-item Epworth Sleepiness Scale, originally developed for conditions such as narcolepsy and obstructive sleep apnea [ 89 ]. The “Epworth score” was essential currency for referrals to some but not all specialist sleep services. Similarly, the C19-YRS had three items relating to anxiety, depression and post-traumatic stress disorder, but in clinics where there was a strong focus on mental health (e.g. when there was a resident psychologist), patients were usually invited to complete more specific tools (e.g. the Patient Health Questionnaire 9 [ 90 ], a 9-item questionnaire originally designed to assess severity of depression).

The third reason for variation was custom and practice. Ethnographic visits revealed that paper copies of certain instruments were routinely stacked on clinicians’ desks in outpatient departments and also (in some cases) handed out by administrative staff in waiting areas so that patients could complete them before seeing the clinician. These familiar clinic artefacts tended to be short (one-page) instruments that had a long tradition of use in clinical practice. They were not always fit for purpose. For example, the Nijmegen questionnaire was developed in the 1980s to assess hyperventilation; it was validated against a longer, “gold standard” instrument for that condition [ 91 ]. It subsequently became popular in respiratory clinics to diagnose or exclude breathing pattern disorder (a condition in which the normal physiological pattern of breathing becomes replaced with less efficient, shallower breathing [ 92 ]), so much so that the researchers who developed the instrument published a paper to warn fellow researchers that it had not been validated for this purpose [ 93 ]. Whilst a validated 17-item instrument for breathing pattern disorder (the Self-Evaluation of Breathing Questionnaire [ 94 ]) does exist, it is not in widespread clinical use. Most clinics in LOCOMOTION used Nijmegen either on all patients (e.g. as part of a comprehensive initial assessment, especially if the service had begun as a respiratory follow-up clinic) or when breathing pattern disorder was suspected.

In sum, the use of outcome measures in long covid clinics was a compromise between standardization and contingency. On the one hand, all clinics accepted the need to use “validated” instruments consistently. On the other hand, there were sometimes good reasons why they deviated from agreed practice, including mismatch between the clinic’s priorities as a research site, its priorities as a clinical service, and the particular clinical needs of a patient; the clinic’s—and the clinician’s—specialist focus; and long-held traditions of using particular instruments with which staff and patients were familiar.

Example quality topic 2: Postural orthostatic tachycardia syndrome (POTS)

Palpitations (common in long covid) and postural orthostatic tachycardia syndrome (POTS, a disproportionate acceleration in heart rate on standing, the assumed cause of palpitations in many long covid patients) was the top priority for quality improvement identified by our patient advisory group. Reflecting discussions and evidence (of various kinds) shared in online patient communities, the group were confident that POTS is common in long covid patients and that many cases remain undetected (perhaps misdiagnosed as anxiety). Their request that all long covid patients should be “screened” for POTS prompted a search for, and synthesis of, evidence (which we published in the BMJ [ 95 ]). In sum, that evidence was sparse and contested, but, combined with standard practice in specialist clinics, broadly supported the judicious use of the NASA Lean Test [ 96 ]. This test involves repeated measurements of pulse and blood pressure with the patient first lying and then standing (with shoulders resting against a wall).

The patient advisory group’s request that the NASA Lean Test should be conducted on all patients met with mixed responses from the clinics. In site F, the lead physician had an interest in autonomic dysfunction in chronic fatigue and was keen; he had already published a paper on how to adapt the NASA Lean Test for self-assessment at home [ 97 ]. Several other sites were initially opposed. Staff at site E, for example, offered various arguments:

The test is time-consuming, labor-intensive, and takes up space in the clinic which has an opportunity cost in terms of other potential uses;

The test is unvalidated and potentially misleading (there is a high incidence of both false negative and false positive results);

There is no proven treatment for POTS, so there is no point in testing for it;

It is a specialist test for a specialist condition, so it should be done in a specialist clinic where its benefits and limitations are better understood;

Objective testing does not change clinical management since what we treat is the patient’s symptoms (e.g. by a pragmatic trial of lifestyle measures and medication);

People with symptoms suggestive of dysautonomia have already been “triaged out” of this clinic (that is, identified in the initial telephone consultation and referred directly to neurology or cardiology);

POTS is a manifestation of the systemic nature of long covid; it does not need specific treatment but will improve spontaneously as the patient goes through standard interventions such as active pacing, respiratory physical therapy and sleep hygiene;

Testing everyone, even when asymptomatic, runs counter to the ethos of rehabilitation, which is to “de-medicalize” patients so as to better orient them to their recovery journey.

When clinics were invited to implement the NASA Lean Test on a consecutive sample of patients to resolve a dispute about the incidence of POTS (from “we’ve only seen a handful of people with it since the clinic began” to “POTS is common and often missed”), all but one site agreed to participate. The tertiary POTS centre linked to site H was already running the NASA Lean Test as standard on all patients. Site C, which operated entirely virtually, passed the work to the referring general practitioner by making this test a precondition for seeing the patient; site D, which was largely virtual, sent instructions for patients to self-administer the test at home.

The NASA Lean Test study has been published separately [ 98 ]. In sum, of 277 consecutive patients tested across the eight clinics, 20 (7%) had a positive NASA Lean Test for POTS and a further 28 (10%) a borderline result. Six of 20 patients who met the criteria for POTS on testing had no prior history of orthostatic intolerance. The question of whether this test should be used to “screen” all patients was not answered definitively. But the experience of participating in the study persuaded some sceptics that postural changes in heart rate could be severe in some long covid patients, did not appear to be fully explained by their previously held theories (e.g. “functional”, anxiety, deconditioning), and had likely been missed in some patients. The outcome of this particular quality improvement cycle was thus not a wholescale change in practice (for which the evidence base was weak) but a more subtle increase in clinical awareness, a greater willingness to consider testing for POTS and a greater commitment to contribute to research into this contested condition.

More generally, the POTS audit prompted some clinicians to recognize the value of quality improvement in novel clinical areas. One physician who had initially commented that POTS was not seen in their clinic, for example, reflected:

“ Our clinic population is changing. […] Overall there’s far fewer post-ICU patients with ECMO [extra-corporeal membrane oxygenation] issues and far more long covid from the community, and this is the bit our clinic isn’t doing so well on. We’re doing great on breathing pattern disorder; neuro[logists] are helping us with the brain fogs; our fatigue and occupational advice is ok but some of the dysautonomia symptoms that are more prevalent in the people who were not hospitalized – that’s where we need to improve .” -Respiratory physician, site G (from field visit 6.6.23)

Example quality topic 3: Management of fatigue

Fatigue was the commonest symptom overall and a high priority among both patients and clinicians for quality improvement. It often coexisted with the cluster of neurocognitive symptoms known as brain fog, with both conditions relapsing and remitting in step. Clinicians were keen to systematize fatigue management using a familiar clinical framework oriented around documenting a full clinical history, identifying associated symptoms, excluding or exploring comorbidities and alternative explanations (e.g. poor sleep patterns, depression, menopause, deconditioning), assessing how fatigue affects physical and mental function, implementing a program of physical and cognitive therapy that was sensitive to the patient’s condition and confidence level, and monitoring progress using validated patient-reported outcome measures and symptom diaries.

The underpinning logic of this approach, which broadly reflected World Health Organization guidance [ 99 ], was that fatigue and linked cognitive impairment could be a manifestation of many—perhaps interacting—conditions but that a whole-patient (body and mind) rehabilitation program was the cornerstone of management in most cases. Discussion in the quality improvement collaborative focused on issues such as whether fatigue was so severe that it produced safety concerns (e.g. in a person’s job or with childcare), the pros and cons of particular online courses such as yoga, relaxation and mindfulness (many were viewed positively, though the evidence base was considered weak), and the extent to which respiratory physical therapy had a crossover impact on fatigue (systematic reviews suggested that it may do, but these reviews also cautioned that primary studies were sparse, methodologically flawed, and heterogeneous [ 100 , 101 ]). They also debated the strengths and limitations of different fatigue-specific outcome measures, each of which had been developed and validated in a different condition, with varying emphasis on cognitive fatigue, physical fatigue, effect on daily life, and motivation. These instruments included the Modified Fatigue Impact Scale; Fatigue Severity Scale [ 102 ]; Fatigue Assessment Scale; Functional Assessment Chronic Illness Therapy—Fatigue (FACIT-F) [ 103 ]; Work and Social Adjustment Scale [ 104 ]; Chalder Fatigue Scale [ 105 ]; Visual Analogue Scale—Fatigue [ 106 ]; and the EQ5D [ 87 ]. In one clinic (site F), three of these scales were used in combination for reasons discussed below.

Some clinicians advocated melatonin or nutritional supplements (such as vitamin D or folic acid) for fatigue on the grounds that many patients found them helpful and formal placebo-controlled trials were unlikely ever to be conducted. But neurostimulants used in other fatigue-predominant conditions (e.g. brain injury, stroke), which also lacked clinical trial evidence in long covid, were viewed as inappropriate in most patients because of lack of evidence of clear benefit and hypothetical risk of harm (e.g. adverse drug reactions, polypharmacy).

Whilst the patient advisory group were broadly supportive of a whole-patient rehabilitative approach to fatigue, their primary concern was fatiguability , especially post-exertional symptom exacerbation (PESE, also known as “crashes”). In these, the patient becomes profoundly fatigued some hours or days after physical or mental exertion, and this state can last for days or even weeks [ 107 ]. Patients viewed PESE as a “red flag” symptom which they felt clinicians often missed and sometimes caused. They wanted the quality improvement effort to focus on ensuring that all clinicians were aware of the risks of PESE and acted accordingly. A discussion among patients and clinicians at a quality improvement collaborative meeting raised a new research hypothesis—that reducing the number of repeated episodes of PESE may improve the natural history of long covid.

These tensions around fatigue management played out differently in different clinics. In site C (the GP-led virtual clinic run from a community hub), fatigue was viewed as one manifestation of a whole-patient condition. The lead general practitioner used the metaphor of untangling a skein of wool: “you have to find the end and then gently pull it”. The underlying problem in a fatigued patient, for example, might be an undiagnosed physical condition such as anaemia, disturbed sleep, or inadequate pacing. These required (respectively) the chronic fatigue service (comprising an occupational therapist and specialist psychologist and oriented mainly to teaching the techniques of goal-setting and pacing), a “tiredness” work-up (e.g. to exclude anaemia or menopause), investigation of poor sleep (which, not uncommonly, was due to obstructive sleep apnea), and exploration of mental health issues.

In site G (a hospital clinic which had evolved from a respiratory service), patients with fatigue went through a fatigue management program led by the occupational therapist with emphasis on pacing, energy conservation, avoidance of PESE and sleep hygiene. Those without ongoing respiratory symptoms were often discharged back to their general practitioner once they had completed this; there was no consultant follow-up of unresolved fatigue.

In site F (a rehabilitation clinic which had a longstanding interest in chronic fatigue even before the pandemic), active interdisciplinary management of fatigue was commenced at or near the patient’s first visit, on the grounds that the earlier this began, the more successful it would be. In this clinic, patients were offered a more intensive package: a similar occupational therapy-led fatigue course as those in site G, plus input from a dietician to advise on regular balanced meals and caffeine avoidance and a group-based facilitated peer support program which centred on fatigue management. The dietician spoke enthusiastically about how improving diet in longstanding long covid patients often improved fatigue (e.g. because they had often lost muscle mass and tended to snack on convenience food rather than make meals from scratch), though she agreed there was no evidence base from trials to support this approach.

Pursuing local quality improvement through MDTs

Whilst some long covid patients had “textbook” symptoms and clinical findings, many cases were unique and some were fiendishly complex. One clinician commented that, somewhat paradoxically, “easy cases” were often the post-ICU follow-ups who had resolving chest complications; they tended to do well with a course of respiratory physical therapy and a return-to-work program. Such cases were rarely brought to MDT meetings. “Difficult cases” were patients who had not been hospitalized for their acute illness but presented with a months- or years-long history of multiple symptoms with fatigue typically predominant. Each one was different, as the following example (some details of which have been fictionalized to protect anonymity) illustrates.

The MDT is discussing Mrs Fermah, a 65-year-old homemaker who had covid-19 a year ago. She has had multiple symptoms since, including fluctuating fatigue, brain fog, breathlessness, retrosternal chest pain of burning character, dry cough, croaky voice, intermittent rashes (sometimes on eating), lips going blue, ankle swelling, orthopnoea, dizziness with the room spinning which can be triggered by stress, low back pain, aches and pains in the arms and legs and pins and needles in the fingertips, loss of taste and smell, palpitations and dizziness (unclear if postural, but clear association with nausea), headaches on waking, and dry mouth. She is somewhat overweight (body mass index 29) and admits to low mood. Functionally, she is mostly confined to the house and can no longer manage the stairs so has begun to sleep downstairs. She has stumbled once or twice but not fallen. Her social life has ceased and she rarely has the energy to see her grandchildren. Her 70-year-old husband is retired and generally supportive, though he spends most evenings at his club. Comorbidities include glaucoma which is well controlled and overseen by an ophthalmologist, mild club foot (congenital) and stage 1 breast cancer 20 years ago. Various tests, including a chest X-ray, resting and exercise oximetry and a blood panel, were normal except for borderline vitamin D level. Her breathing questionnaire score suggests she does not have breathing pattern disorder. ECG showed first-degree atrioventricular block and left axis deviation. No clinician has witnessed the blue lips. Her current treatment is online group respiratory physical therapy; a home visit is being arranged to assess her climbing stairs. She has declined a psychologist assessment. The consultant asks the nurse who assessed her: “Did you get a feel if this is a POTS-type dizziness or an ENT-type?” She sighs. “Honestly it was hard to tell, bless her.”—Site A MDT

This patient’s debilitating symptoms and functional impairments could all be due to long covid, yet “evidence-based” guidance for how to manage her complex suffering does not exist and likely never will exist. The question of which (if any) additional blood or imaging tests to do, in what order of priority, and what interventions to offer the patient will not be definitively answered by consulting clinical trials involving hundreds of patients, since (even if these existed) the decision involves weighing this patient’s history and the multiple factors and uncertainties that are relevant in her case. The knowledge that will help the MDT provide quality care to Mrs Fermah is case-based knowledge—accumulated clinical experience and wisdom from managing and deliberating on multiple similar cases. We consider case-based knowledge further in the “ Discussion ”.

Summary of key findings

This study has shown that a quality improvement collaborative of UK long covid clinics made some progress towards standardizing assessment and management in some topics, but some variation remained. This could be explained in part by the fact that different clinics had different histories and path dependencies, occupied a different place in the local healthcare ecosystem, served different populations, were differently staffed, and had different clinical interests. Our patient advisory group and clinicians in the quality improvement collaborative broadly prioritized the same topics for improvement but interpreted them somewhat differently. “Quality” long covid care had multiple dimensions, relating to (among other things) service set-up and accessibility, clinical provision appropriate to the patient’s need (including options for referral to other services locally), the human qualities of clinical and support staff, how knowledge was distributed across (and accessible within) the system, and the accumulated collective wisdom of local MDTs in dealing with complex cases (including multiple kinds of specialist expertise as well as relational knowledge of what was at stake for the patient). Whilst both staff and patients were keen to contribute to the quality improvement effort, the burden of measurement was evident: multiple outcome measures, used repeatedly, were resource-intensive for staff and exhausting for patients.

Strengths and limitations of this study

To our knowledge, we are the first to report both a quality improvement collaborative and an in-depth qualitative study of clinical work in long covid. Key strengths of this work include the diverse sampling frame (with sites from three UK jurisdictions and serving widely differing geographies and demographics); the use of documents, interviews and reflexive interpretive ethnography to produce meaningful accounts of how clinics emerged and how they were currently organized; the use of philosophical concepts to analyse data on how MDTs produced quality care on a patient-by-patient basis; and the close involvement of patient co-researchers and coauthors during the research and writing up.

Limitations of the study include its exclusive UK focus (the external validity of findings to other healthcare systems is unknown); the self-selecting nature of participants in a quality improvement collaborative (our patient advisory group suggested that the MDTs observed in this study may have represented the higher end of a quality spectrum, hence would be more likely than other MDTs to adhere to guidelines); and the particular perspective brought by the researchers (two GPs, a physical therapist and one non-clinical person) in ethnographic observations. Hospital specialists or organizational scholars, for example, may have noticed different things or framed what they observed differently.

Explaining variation in long covid care

Sutherland and Levesque’s framework mentioned in the “ Background ” section does not explain much of the variation found in our study [ 70 ]. In terms of capacity, at the time of this study most participating clinics benefited from ring-fenced resources. In terms of evidence, guidelines existed and were not greatly contested, but as illustrated by the case of Mrs Fermah above, many patients were exceptions to the guideline because of complex symptomatology and relevant comorbidities. In terms of agency, clinicians in most clinics were passionately engaged with long covid (they were pioneers who had set up their local clinic and successfully bid for national ring-fenced resources) and were generally keen to support patient choice (though not if the patient requested tests which were unavailable or deemed not indicated).

Astma et al.’s list of factors that may explain variation in practice (see “ Background ”) includes several that may be relevant to long covid, especially that the definition of appropriate care in this condition remains somewhat contested. But lack of opportunity to discuss cases was not a problem in the clinics in our sample. On the contrary, MDT meetings in each locality gave clinicians multiple opportunities to discuss cases with colleagues and reflect collectively on whether and how to apply particular guidelines.

The key problem was not that clinicians disputed the guidelines for managing long covid or were unaware of them; it was that the guidelines were not self-interpreting . Rather, MDTs had to deliberate on the balance of benefits and harms in different aspects of individual cases. In patients whose symptoms suggested a possible diagnosis of POTS (or who suspected themselves of having POTS), for example, these deliberations were sometimes lengthy and nuanced. Should a test result that is not technically in the abnormal range but close to it be treated as diagnostic, given that symptoms point to this diagnosis? If not, should the patient be told that the test excludes POTS or that it is equivocal? If a cardiology opinion has stated firmly that the patient does not have POTS but the cardiologist is not known for their interest in this condition, should a second specialist opinion be sought? If the gold standard “tilt test” [ 108 ] for POTS (usually available only in tertiary centres) is not available locally, does this patient merit a costly out-of-locality referral? Should the patient’s request for a trial of off-label medication, reflecting discussions in an online support group, be honoured? These are the kinds of questions on which MDTs deliberated at length.

The fact that many cases required extensive deliberation does not necessarily justify variation in practice among clinics. But taking into account the clinics’ very different histories, set-up, and local referral pathways, the variation begins to make sense. A patient who is being assessed in a clinic that functions as a specialist chronic fatigue centre and attracts referrals which reflect this interest (e.g. site F in our sample) will receive different management advice from one that functions as a telephone-only generalist assessment centre and refers on to other specialties (site C in our sample). The wide variation in case mix, coupled with the fact that a different proportion of these cases were highly complex in each clinic (and in different ways), suggests that variation in practice may reflect appropriate rather than inappropriate care.

Our patient advisory group affirmed that many of the findings reported here resonated with their own experience, but they raised several concerns. These included questions about patient groups who may have been missed in our sample because they were rarely discussed in MDTs. The decision to take a case to MDT discussion is taken largely by a clinician, and there was evidence from online support groups that some patients’ requests for their case to be taken to an MDT had been declined (though not, to our knowledge, in the clinics participating in the LOCOMOTION study).

We began this study by asking “what is quality in long covid care?”. We initially assumed that this question referred to a generalizable evidence base, which we felt we could identify, and we believed that we could then determine whether long covid clinics were following the evidence base through conventional audits of structure, process, and outcome. In retrospect, these assumptions were somewhat naïve. On the basis of our findings, we suggest that a better (and more individualized) research question might be “to what extent does each patient with long covid receive evidence-based care appropriate to their needs?”. This question would require individual case review on a sample of cases, tracking each patient longitudinally including cross-referrals, and also interviewing the patient.

Nomothetic versus idiographic knowledge

In a series of lectures first delivered in the 1950s and recently republished [ 109 ], psychiatrist Dr Maurice O’Connor Drury drew on the later philosophy of his friend and mentor Ludwig Wittgenstein to challenge what he felt was a concerning trend: that the nomothetic (generalizable, abstract) knowledge from randomized controlled trials (RCTs) was coming to over-ride the idiographic (personal, situated) knowledge about particular patients. Based on Wittgenstein’s writings on the importance of the particular, Drury predicted—presciently—that if implemented uncritically, RCTs would result in worse, not better, care for patients, since it would go hand-in-hand with a downgrading of experience, intuition, subjective judgement, personal reflection, and collective deliberation.

Much conventional quality improvement methodology is built on an assumption that nomothetic knowledge (for example, findings from RCTs and systematic reviews) is a higher form of knowing than idiographic knowledge. But idiographic, case-based reasoning—despite its position at the very bottom of evidence-based medicine’s hierarchy of evidence [ 110 ]—is a legitimate and important element of medical practice. Bioethicist Kathryn Montgomery, drawing on Aristotle’s notion of praxis , considers clinical practice to be an example of case-based reasoning [ 111 ]. Medicine is governed not by hard and fast laws but by competing maxims or rules of thumb ; the essence of judgement is deciding which (if any) rule should be applied in a particular circumstance. Clinical judgement incorporates science (especially the results of well-conducted research) and makes use of available tools and technologies (including guidelines and decision-support algorithms that incorporate research findings). But rather than being determined solely by these elements, clinical judgement is guided both by the scientific evidence and by the practical and ethical question “what is it best to do, for this individual, given these circumstances?”.

In this study, we observed clinical management of, and MDT deliberations on, hundreds of clinical cases. In the more straightforward ones (for example, recovering pneumonitis), guideline-driven care was not difficult to implement and such cases were rarely brought to the MDT. But cases like Mrs Fermah (see last section of “ Results ”) required much discussion on which aspects of which guideline were in the patient’s best interests to bring into play at any particular stage in their illness journey.

Conclusions

One systematic review on quality improvement collaboratives concluded that “ [those] reporting success generally addressed relatively straightforward aspects of care, had a strong evidence base and noted a clear evidence-practice gap in an accepted clinical pathway or guideline” (page 226) [ 60 ]. The findings from this study suggest that to the extent that such collaboratives address clinical cases that are not straightforward, conventional quality improvement methods may be less useful and even counterproductive.

The question “what is quality in long covid care?” is partly a philosophical one. Our findings support an approach that recognizes and values idiographic knowledge —including establishing and protecting a safe and supportive space for deliberation on individual cases to occur and to value and draw upon the collective learning that occurs in these spaces. It is through such deliberation that evidence-based guidelines can be appropriately interpreted and applied to the unique needs and circumstances of individual patients. We suggest that Drury’s warning about the limitations of nomothetic knowledge should prompt a reassessment of policies that rely too heavily on such knowledge, resulting in one-size-fits-all protocols. We also cautiously hypothesize that the need to centre the quality improvement effort on idiographic rather than nomothetic knowledge is unlikely to be unique to long covid. Indeed, such an approach may be particularly important in any condition that is complex, unpredictable, variable in presentation and clinical course, and associated with comorbidities.

Availability of data and materials

Selected qualitative data (ensuring no identifiable information) will be made available to formal research teams on reasonable request to Professor Greenhalgh at the University of Oxford, on condition that they have research ethics approval and relevant expertise. The quantitative data on NASA Lean Test have been published in full in a separate paper [ 98 ].

Abbreviations

Chronic fatigue syndrome

Intensive care unit

Jenny Ceolta-Smith

Julie Darbyshire

LOng COvid Multidisciplinary consortium Optimising Treatments and services across the NHS

Multidisciplinary team

Myalgic encephalomyelitis

Middle East Respiratory Syndrome

National Aeronautics and Space Association

Occupational therapy/ist

Post-exertional symptom exacerbation

Postural orthostatic tachycardia syndrome

Speech and language therapy

Severe Acute Respiratory Syndrome

Trisha Greenhalgh

United Kingdom

United States

World Health Organization

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Acknowledgements

We are grateful to clinic staff for allowing us to study their work and to patients for allowing us to sit in on their consultations. We also thank the funder of LOCOMOTION (National Institute for Health Research) and the patient advisory group for lived experience input.

This research is supported by National Institute for Health Research (NIHR) Long Covid Research Scheme grant (Ref COV-LT-0016).

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TG conceptualized the overall study, led the empirical work, supported the quality improvement meetings, conducted the ethnographic visits, led the data analysis, developed the theorization and wrote the first draft of the paper. JLD organized and led the quality improvement meetings, supported site-based researchers to collect and analyse data on their clinic, collated and summarized data on quality topics, and liaised with the patient advisory group. CL conceptualized and led the quality topic on POTS, including exploring reasons for some clinics’ reluctance to conduct testing and collating and analysing the NASA Lean Test data across all sites. EL assisted with ethnographic visits, data analysis, and theorization. JCS contributed lived experience of long covid and also clinical experience as an occupational therapist; she liaised with the wider patient advisory group, whose independent (patient-led) audit of long covid clinics informed the quality improvement prioritization exercise. All authors provided extensive feedback on drafts and contributed to discussions and refinements. All authors read and approved the final manuscript.

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LOng COvid Multidisciplinary consortium Optimising Treatments and servIces acrOss the NHS study is sponsored by the University of Leeds and approved by Yorkshire & The Humber—Bradford Leeds Research Ethics Committee (ref: 21/YH/0276) and subsequent amendments.

Patient participants in clinic were approached by the clinician (without the researcher present) and gave verbal informed consent for a clinically qualified researcher to observe the consultation. If they consented, the researcher was then invited to sit in. A written record was made in field notes of this verbal consent. It was impractical to seek consent from patients whose cases were discussed (usually with very brief clinical details) in online MDTs. Therefore, clinical case examples from MDTs presented in the paper are fictionalized cases constructed from multiple real cases and with key clinical details changed (for example, comorbidities were replaced with different conditions which would produce similar symptoms). All fictionalized cases were checked by our patient advisory group to check that they were plausible to lived experience experts.

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No direct patient cases are reported in this manuscript. For details of how the fictionalized cases were constructed and validated, see “Consent to participate” above.

Competing interests

TG was a member of the UK National Long Covid Task Force 2021–2023 and on the Oversight Group for the NICE Guideline on Long Covid 2021–2022. She is a member of Independent SAGE.

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Greenhalgh, T., Darbyshire, J.L., Lee, C. et al. What is quality in long covid care? Lessons from a national quality improvement collaborative and multi-site ethnography. BMC Med 22 , 159 (2024). https://doi.org/10.1186/s12916-024-03371-6

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Differences in Lymph Node Metastases Patterns Among Non-pancreatic Periampullary Cancers and Histologic Subtypes: An International Multicenter Retrospective Cohort Study and Systematic Review

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• Bas A. Uijterwijk MD 1 , 2 , 3 ,
• Daniël H. Lemmers MD 1 , 2 , 3 ,
• Giuseppe Kito Fusai MD, PhD 4 ,
• Alessandro Zerbi MD, PhD 5 ,
• Roberto Salvia MD, PhD 6 ,
• Ernesto Sparrelid MD, PhD 7 ,
• Steven White MD, PhD 8 ,
• Bergthor Björnsson MD, PhD 9 ,
• Vasileios K. Mavroeidis MD, PhD 10 , 11 ,
• Keith J. Roberts MD, PhD 12 ,
• Michele Mazzola MD, PhD 13 ,
• Santiago Sánchez Cabús MD, PhD 14 ,
• Zahir Soonawalla MD, PhD 11 ,
• Dimitris Korkolis MD, PhD 15 ,
• Mario Serradilla MD, PhD 16 ,
• Patrick Pessaux MD, PhD 17 ,
• Misha Luyer MD, PhD 18 ,
• Nicholas Mowbray MD, PhD 19 ,
• Benedetto Ielpo MD, PhD 20 ,
• Alessandro Mazzotta MD, PhD 21 ,
• Jorg Kleeff MD, PhD 22 ,
• Ugo Boggi MD 23 ,
• Miguel Angel Suarez Muñoz MD, PhD 24 ,
• Brian K. P. Goh MD, PhD 25 ,
• Elena Andreotti MD 1 ,
• Hanneke Wilmink MD, PhD 26 ,
• Michele Ghidini MD, PhD 27 ,
• Alberto Zaniboni MD, PhD 28 ,
• Caroline Verbeke MD, PhD 29 ,
• Volkan Adsay MD, PhD 30 ,
• Denise Bianchi MD, PhD 31 ,
• Marc G. Besselink MD, PhD 2 &
• Mohammed Abu Hilal MD, PhD 1

For the International Study Group on Non-Pancreatic Periampullary Cancer (ISGACA)

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Standard lymphadenectomy for pancreatoduodenectomy is defined for pancreatic ductal adenocarcinoma and adopted for patients with non-pancreatic periampullary cancer (NPPC), ampullary adenocarcinoma (AAC), distal cholangiocarcinoma (dCCA), or duodenal adenocarcinoma (DAC). This study aimed to compare the patterns of lymph node metastases among the different NPPCs in a large series and in a systematic review to guide the discussion on surgical lymphadenectomy and pathology assessment.

This retrospective cohort study included patients after pancreatoduodenectomy for NPPC with at least one lymph node metastasis (2010–2021) from 24 centers in nine countries. The primary outcome was identification of lymph node stations affected in case of a lymph node metastasis per NPPC. A separate systematic review included studies on lymph node metastases patterns of AAC, dCCA, and DAC.

The study included 2367 patients, of whom 1535 had AAC, 616 had dCCA, and 216 had DAC. More patients with pancreatobiliary type AAC had one or more lymph node metastasis (67.2% vs 44.8%; P < 0.001) compared with intestinal-type, but no differences in metastasis pattern were observed. Stations 13 and 17 were most frequently involved (95%, 94%, and 90%). Whereas dCCA metastasized more frequently to station 12 (13.0% vs 6.4% and 7.0%, P = 0.005), DAC metastasized more frequently to stations 6 (5.0% vs 0% and 2.7%; P < 0.001) and 14 (17.0% vs 8.4% and 11.7%, P = 0.015).

This study is the first to comprehensively demonstrate the differences and similarities in lymph node metastases spread among NPPCs, to identify the existing research gaps, and to underscore the importance of standardized lymphadenectomy and pathologic assessment for AAC, dCCA, and DAC.

Avoid common mistakes on your manuscript.

Non-pancreatic periampullary cancers (NPPCs) are a group of tumors with a close anatomic relation including ampullary carcinoma (AAC, consisting of the intestinal, pancreatobiliary, and mixed/hybrid subtypes), 1 distal cholangiocarcinoma (dCCA), and duodenal adenocarcinoma (DAC). 2 These tumors are relatively rare, but they have a poor prognosis, with reported 5-year survival rates ranging from 30 to 70% for AAC, 3 , 4 , 5 18 to 40% for dCCA, 6 , 7 , 8 , 9 and 46 to 71% for DAC. 10 , 11 , 12 A critical determinant of a worse prognosis for NPPC, influencingthe decision for adjuvant treatment, is lymph node metastases. 10 , 13 , 14 Therefore, adequate lymphadenectomy and pathologic assessment of the resected lymph nodes is crucial for accurate staging and has an impact on postoperative treatment methods such as chemotherapy.

Standard lymphadenectomy, as described by the International Study Group of Pancreatic Surgery (ISGPS), defines the lymph node stations that require resection during pancreatoduodenectomy. 15 Lymphadenectomy has been standardized for patients with resectable pancreatic ducal adenocarcinoma (PDAC) and was subsequently adopted for patients with NPPC. However, lymphatic drainage of the NPPCs is not necessarily similar to that of PDAC because the embryologic origin of the ventral (with a biliary system) and dorsal pancreas evolve from two different outpouchings of the endodermal lining of the duodenum. 16 Furthermore, studies that assessed the lymph node metastases patterns for different NPPCs are limited to observational studies with a low number of patients focused on determining the overall lymph node yield rather than specifying which lymph node stations should be included in the lymphadenectomy and identified during pathologic assessment of the resection specimen.

To date, the lymph node metastases patterns of the different NPPCs have not been well characterized or compared with each other. Therefore, this study aimed to evaluate the differences in lymph node metastases patterns among the different NPPCs in order to guide the clinical practice for the surgeon’s lymphadenectomy and pathology examination.

Study Design

This study was a multicenter international retrospective observational cohort study using the database of the international study group on non-pancreatic periampullary cancer (ISGACA; www.isgaca.com ) combined with a systematic literature review. The Ethical Committee Brescia approved the study (NP 5269–STUDIO NPPC 15.03.2022). This retrospective study followed the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines and checklist. 17

Data Collection

Data from the ISGACA database were retrospectively collected from 24 centers located in the United Kingdom ( n = 7), Italy ( n = 4), Spain ( n = 4), Sweden ( n = 2), the Netherlands ( n = 2), France ( n = 2), Germany ( n = 1), Greece ( n = 1), and Singapore ( n = 1).

Patient Inclusion

The patients included in this study met the following criteria: confirmed pathology report indicating AAC, dCCA, or DAC and underwent curative-intent resection via an open, laparoscopic, robotic or hybrid classic Whipple or pylorus-preserving pancreatoduodenectomy between 2010 and 2021. Cases that involved pancreas-preserving duodenectomy or limited duodenal resection were not considered for inclusion. Patients who had distant metastasis or received neoadjuvant chemotherapy were excluded from analyses. As the study was conducted across multiple centers, local surgical and postoperative clinical protocols were followed.

The cohorts included in this study were patients with AAC, dCCA, or DAC. The definition of the AAC cohort was based on a subgroup assessment before the main assessment of the study. Within the AAC cohort, two subgroups were compared before the main analyses, including intestinal-type and pancreatobiliary-type AAC, in order to assess whether AAC should be assessed according to subtype or as AAC collectively. Due to the lack of a precise classification for the mixed/hybrid subtype of ampullary carcinoma, this subgroup was not considered helpful in the assessment of the other subgroups. In case no significant differences were found between the intestinal and pancreatobiliary subtypes, the ampullary subgroups were combined including patients with all subtypes (intestinal, pancreatobiliary, mixed/hybrid, or unknown subtype) of AAC. After subgroup analyses of the AAC cohort, the AAC was compared with the dCCA and DAC cohorts.

Data Definitions

The collected demographic data were sex, age (years), American Society of Anesthesiologists (ASA) classification, 18 body mass index (BMI [kg/m 2 ]), and administration of adjuvant chemotherapy. Resected specimens were evaluated by local certified pathologists, and results were reported per local protocol. 19 The pathology data were obtained from the local postoperative pathology reports. The techniques used for subtyping were based on histomorphology and supported in some cases by immunohistochemistry.

The definitions of AAC, DAC, dCCA, and PDAC were based on WHO classification, 20 and pathology examination followed local protocols. Tumor classification followed the seventh edition of the American Joint Committee on Cancer (AJCC) classification. 21 An R1 resection margin was defined as smaller than 1 mm according to the definition of the Royal College of Pathologists. 19 Tumor size was measured in millimeters in the postoperative specimen assessment.

The presence of lymph node metastasis, perineural invasion, and lymphovascular invasion and the grade of differentiation were collected. The lymph node ratio was calculated by dividing the total number of metastatic lymph nodes by the total number of lymph nodes harvested during surgery (lymph node yield). In case of lymph node metastasis, the location or locations of the metastases were reported, including the following lymph node stations regardless of the number of lymph node metastases per station: peripancreatic (nos. 13 and 17), infra pyloric (no. 6), common hepatic artery (no. 8), celiac trunk (no. 9), hepatoduodenal ligament (no. 12) and superior mesenteric artery (no. 14),.

The primary outcome of the study was the percentage of patients with lymph node metastasis in the aforementioned relevant lymph node stations. The reported percentage of lymph node metastasis was calculated by dividing the number of patients with a lymph node metastasis in the concerning lymph node station by the total number of patients who had an N1 (≥1 lymph node metastases) in the same cohort.

Systematic Literature Review

All the included studies (case series, case-control studies, retrospective cohorts, prospective cohorts, and randomized controlled trials) on lymph node metastasis locations of AAC, dCCA, DAC were identified using Pubmed, Embase (via Ovid), and Cochrane databases. The keywords “ampulla,” “distal bile duct,” “duodenum,” “cancer,” and “lymph node metastases” with all potential synonyms were used in combination to identify all relevant studies until February 2023 (elaboration of the search strategy is available in the supplementary material).

The search was extended with a manual evaluation of relevant references used in the included articles. The results from the included studies, the occurrence of lymph node metastases in the different lymph node stations, were collected and summarized. The studies were separated per NPPC subtype, and the presence or absence of metastases was assessed in each lymph node station available in the study. Binary data (lymph node metastasis or no lymph node metastasis) were collected for each lymph node station, and the prevalence and distribution of lymph node metastases were determined.

Statistical Analyses

The data collected for this study were analyzed using R (version 4.2.3 for macOS). Missing data were excluded from analyses. The statistical significance level was set at a P value lower than 0.05 for the reporting of all results. Normally distributed data are presented as means with standard deviations, whereas non-normally distributed data are presented as medians with interquartile ranges (IQRs). Categorical variables are reported as frequencies and proportions and compared using the chi square-test or Fisher’s test as appropriate. Numeric data were compared using Student’s t test for normally distributed data and the Mann-Whitney U test for non-normally distributed data.

The individual effect of the lymph node metastases per lymph node station on overall survival was assessed for all the all patients with one or more lymph node metastases using uni- and multivariate Cox hazard models. All lymph node station variables were entered into the Cox proportional hazard regression model, and the variable for the different tumor subgroups was added as an individual covariate. Univariate Cox hazard model (enter method) analysis was performed, and subsequently, all variables with a P value lower than 0.20 were selected for multivariate analyses. Coefficients, hazard ratios (HRs), standard errors, z values, and P values for each variable of the final model are presented.

Literature Review

The systematic literature search strategy and study selection can be found in the supplementary materials. After screening for eligibility, 13 studies were included (8 for AAC, 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 4 for dCCA, 26 , 30 , 31 , 32 and 3 for DAC). 26 , 33 , 34 Hempel et al. 26 assessed all three NPPCs (Table 2 ). In the included studies, the total numbers of AAC, dCCA, and DAC patients presenting with one or more lymph node metastases were respectively 476, 241, and 78. None of the studies compared the lymph node metastases patterns among the NPPCs, and none of the studies assessed lymph node spread among the ampullary subtypes. The percentages varied widely due to the use of different methods in data collection and reporting of the outcomes. In Table 2 , an overview of the current literature and lymph node metastasis distribution is displayed.

Cohort Study

Baseline characteristics.

Patients for this study were included from 24 centers across nine countries, resulting in a total of 2367 patients (Table 1 ). Of these patients, 1535 had AAC (including 480 with the intestinal subtype and 568 with the pancreatobiliary subtype), 626 had dCCA, and 216 had DAC (Table 1 ). One or more lymph node metastases were found in 871 (59.9%) of the patients with AAC, 298 (61.0%) of the patients with dCCA, and 121 (65.0%) of the patients with DAC.

Subtypes of AAC

The lymph node metastases patterns of the intestinal and pancreatobiliary subtypes of AAC were compared before the primary outcomes and are reported in Table 2 . Although the pancreatobiliary-type AAC had more lymph node metastases (372, 67.2%) than the intestinal type ( n = 208 [44.8%]; P <0.001; Table 1 ), a comparable lymph node metastasis pattern was found between the intestinal and pancreatobiliary types of ampullary cancer ( P > 0.05; Table 2 ). Therefore, both subtypes were combined into a collective cohort for further analyses.

Comparison of the NPPCs

For AAC, dCCA, and DAC, the majority of lymph node metastases were located in peripancreatic lymph node stations 13 (94.7%), 17 (94.2%), or both (90.0%) ( P = 0.167, Table 2 ). The infra-pyloric lymph node station 6 was more frequently affected in DAC (5.0%) than in dCCA (2.7%) or AAC (0%) ( P < 0.001). The hepatoduodenal ligament station 12 was more frequently affected in dCCA (13.0%) than in DAC (7.0%) or AAC (6.4%) ( P = 0.005). The superior mesenteric artery station 14 was more frequently affected in DAC (17.0%) than in dCCA (11.7%) or AAC (8.4%) ( P = 0.015). Figure 1 gives a visual presentation of the differences in lymph node metastases patterns among the different NPPCs.

Distribution of lymph node metastases among ampullary adenocarcinoma, distal cholangiocarcinoma, and duodenal adenocarcinoma. Lymph node stations: peripancreatic (nos. 13 and 17), infra pyloric (no. 6), common hepatic artery (no. 8), celiac trunk (no. 9), hepatoduodenal ligament (no. 12), superior mesenteric artery (no. 14). Significant differences are found in lymph node stations 6, 12, and 14 ( P < 0.05). The percentages correspond with those in Table 2

Lymph Node Metastases as Predictors for Overall Survival

Table 3 demonstrates uni- and multivariate Cox regression analyses for each lymph node station associated with overall survival. The variables for tumor type, lymph node station 9, and lymph node station 14 showed a potential influence on survival, with a P value lower than 0.20 in univariate analyses, and were included in the multivariate model. The multivariate Cox proportional hazard model showed an individual predictive effect of one or more lymph node metastases on overall survival in lymph node station 14 regardless of tumor type or other lymph node metastases (HR, 1.559; P = 0.009).

This international multicenter cohort study showed that NPPC most frequently metastasizes to the peripancreatic lymph node stations. Lymph node station 8 was more frequently affected in patients with dCCA, whereas stations 6 and 14 were more frequently affected in patients with DAC. Lymph node metastases in station 14 were found to be an individual predictor for survival. The rate of lymph node metastases differed between the intestinal and pancreatobiliary types of ampullary cancer, whereas there was no difference in lymph node metastases patterns.

This study combined a large retrospective cohort study with a systematic literature review. The systematic literature review showed the inability of current existing literature to provide a comprehensive comparison of lymph node metastases patterns among NPPCs. Despite the lack of adequate conclusive insights in lymph node metastases patterns among different NPPCs, the literature review provided an overview of the current evidence, showed heterogenic outcomes, and identified the research gap in this topic.

The ISGPS defined the standard lymphadenectomy, which included lymph node stations 5, 6, 8a, 12b1, 12b2, 12c, 13a, 13b, 14a, 14b, 17a, and 17b. 15 However, the standard lymphadenectomy was based on patients with PDAC. Overall, the differences in lymph node metastases patterns found between AAC, dCCA, and DAC in this study showed the importance of a standardized adequate lymphadenectomy during pancreatoduodenectomy and supported the ISGPS standard lymphadenectomy for AAC, dCCA, and DAC.

The existing literature already suggested that the majority of lymph node metastases are found in peripancreatic lymph nodes stations 13 and 17 for AAC, 22 , 23 , 25 , 27 , 28 , 29 dCCA, 30 , 31 , 32 and DAC. 33 This study confirmed that most lymph node metastases are located in peripancreatic stations 13 and 17 of all NPPCs. However, it is important to note that despite the clear majority of affected lymph nodes in lymph node stations 13 and 17, these do not act as “sentinel nodes.”

Differences in the proportions of affected lymph nodes were found in lymph node stations 6, 12, and 14. Lymph node station 12 was found to have a metastasis more often in case of dCCA, and lymph node stations 6 and 14 were found to have a metastasis more often in case of DAC. Because most pancreatic centers perform profound pathology assessment of surgical specimen, this evidence does not directly demand alternation in current clinical care. However, the observed variation among NPPCs in lymph node metastases patterns should serve as a guide for the pathologist, indicating that the identification of crucial lymph node stations in the specimen differs per NPPC. In cases with no identification of relevant lymph nodes, a revision of the specimen could be considered. Future studies should assess whether more profound lymph node examination (i.e., multiple-section examination or additional staining) of these specific lymph nodes leads to the identification of otherwise missed micro-metastases.

Lymph node metastases in pancreatic cancer and periampullary cancer are associated with reduced survival rates. 10 , 13 , 14 Nevertheless, the clinical relevance of lymph node metastases in each of the lymph node stations in the peripancreatic region requires further evaluation. This study evaluated the individual impact of metastases in each lymph node station on overall survival while accounting for the NPPC tumor type. The analysis indicated that a metastasis in lymph node station 14 significantly and independently predicts overall survival. This predictive value results in extra importance for adequate lymphadenectomy around the superior mesenteric artery and for identification of lymph station 14 in pathology examination. With adequate documentation of resection and assessment, future studies can assess whether resection of lymph node 14 holds a therapeutic value or may contribute in selecting patients who could benefit most from adjuvant chemotherapy.

The intestinal and pancreatobiliary AAC types differ regarding prognosis and response to chemotherapy. 35 , 36 , 37 However, there was no evidence on the distribution of lymph node metastases between the ampullary subtypes. This study demonstrated that the occurrence of lymph node metastases, high T stage, lymphovascular invasion, and R1 resections was significantly more prevalent in the pancreatobiliary-type than in the intestinal-type AAC, whereas no differences were observed in the pattern of lymph node metastases. This suggests that despite the differences in tumor aggressiveness and behavior between the subtypes, 38 the lymphatic drainage of the intestinal and pancreatobiliary AAC types appears to be comparable. This finding contributes to a deeper understanding of the tumor biology of AAC subtypes.

For DAC specifically, a potential surgical option is the segment resection. Sakamoto et al. 33 and Nishio et al. 34 both show that a segmental resection is only an option for T1(a), very distal duodenal tumors, or patients unfit for pancreatoduodenectomy. The results of this study demonstrated the diverse lymph node metastases pattern of the DAC. Especially in high-grade DAC, it is not recommended to perform a segmental resection over a pancreatoduodenectomy.

An extended lymphadenectomy is not recommended for patients with pancreatic ductal adenocarcinoma (PDAC) because it can result in increased morbidity and worse surgical outcomes without any survival benefits. 15 , 39 Some studies claim that because the survival rate is significantly worse for patients with lymph node metastases in station 16, it should be classified as a distant metastases and categorized as M1 in the tumor-node-metastasis (TNM) classification. 40 The effect of lymph node metastases on lymph node station 16 for AAC, dCCA, and DAC has been only marginally researched. 25 , 26 , 29 , 41 Hempel et al. 26 demonstrated that for NPPCs, a lymph node metastasis in station 16 did not limit overall survival in a small single-center setting. Yet, it is common practice not to resect lymph node station 16 for NPPCs, similar to PDAC. Future studies should explore the effect of lymph node metastases in station 16 for AAC, dCCA, and DAC individually and assess whether the resection of station 16 would result in survival benefit and better staging, or whether similar to PDAC, it does not seem to benefit the patients.

The results of this study should be interpreted with some limitations in mind. First, due to the retrospective character of the study, specimens could not be revised, and not all pathologists followed standard reporting on found lymph node locations. Consequently, if lymph nodes were absent or not found in the specimen, they were likely categorized as negative. Despite the assumption that missing lymph nodes are mostly negative due to their small size, a small possibility of overlooked positive nodes remains, potentially leading to an underestimation of the number of positive lymph nodes. However, we maintain the belief that these situations were uncommon, and considering the high numbers involved, they did not have a significant impact on the study outcomes.

Second, station 8 is not separated for anterior and/or posterior in our database. However, this study suggests that mainly for dCCA and DAC, lymph node station 8 plays an important role. It is therefore important to pay attention to resection of both lymph node stations 8a and 8p during pancreatoduodenectomy, in which station 8a is more frequently resected and 8p is mainly collected separately.

Third, the minimal lymph node yield was not addressed in this study. It is commonly mentioned that a minimum of 15 lymph nodes should be resected during the procedure. Although lymph node yield is considered an indicator of surgical quality, the primary focus should be on resecting all important stations rather than on solely aiming for a specific number.

Fourth, the availability of the TNM eighth classification was limited to the recent years. Consequently, the decision was made to use the seventh TNM classification based on data completeness. Table S1 in the supplementary material shows the comparison between the seventh and eighth TNM classifications for AAC, dCCA, and DAC.

Fifth, the mixed or hybrid subtypes are described in the literature as important subtypes of AAC. 1 However, definitions of these subtypes varied among centers, so it could not be stated with certainty that a tumor categorized as mixed was not in reality an intestinal or pancreatobiliary AAC type. Therefore, this cohort was considered too heterogenic to be included in the AAC subgroup comparison. Because certified pathologists diagnosed all AAC cases, those labeled mixed/hybrid-type AAC were included in the AAC cohort.

Sixth, there are no data on the exact location of the periampullary duodenal adenocarcinoma. Future studies should incorporate this in order to assess the correlation between location and lymph node spread.

Finally, due to the multicenter international approach, local regional differences in perioperative patient care were inevitable.

Despite its limitations, this study is the first, largest, and most comprehensive evaluation of lymph node metastases patterns in all NPPCs to date, including both a systematic literature search and a large number of patients from multiple centers and countries. Due to the combination, this study provides all data currently available on the topic. Furthermore, the sufficient number of patients with all NPPCs allowed reporting on the lymph node metastases patterns per NPPC individually and making of comparisons among AAC, dCCA, and DAC. In addition, the inclusion of subgroups for AAC provided more detailed information on differences in lymph node metastases patterns between intestinal-type and pancreatobiliary-type cancers.

In conclusion, this study demonstrated the distribution of lymph node metastases in AAC, dCCA, and DAC individually, aiding in the understanding of tumor biology. The differences in lymph node metastases found among NPPCs can guide the pathologist in targeted identification of lymph nodes during specimen assessment. As shown for PDAC, this study confirms the value of standardized lymphadenectomy for all periampullary cancers. Moving forward, future research should explore whether surgical techniques can be further personalized and whether targeted lymph node identification decreases otherwise missed micro-metastases.

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Acknowledgement

Collaborators: Gennaro Nappo, Poya Ghorbani, Giuseppe Malleo, Francesco Lancelotti, Niccolò Napoli, Stuart Robinson, Khalid Khalil, Alejandro Ramirez-Del Val, Matthew C M Mortimer, Bilal Al-Sarireh, Ye Xin Koh, Ricky Bhogal, Alejandro Serrablo, Brice Gayet, Karin Johansen, Mark Ramaekers, Alessandro Giani.

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Bas A. Uijterwijk MD, Daniël H. Lemmers MD, Elena Andreotti MD, Mohammed Abu Hilal MD, PhD & Giuseppe Malleo

Department of Surgery, Amsterdam UMC, Location University of Amsterdam, Amsterdam, The Netherlands

Bas A. Uijterwijk MD, Daniël H. Lemmers MD & Marc G. Besselink MD, PhD

Cancer Center Amsterdam, Amsterdam, The Netherlands

Bas A. Uijterwijk MD & Daniël H. Lemmers MD

Department of Surgery, Royal Free London NHS Foundation Trust, London, UK

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Department of Surgery, Catharina Hospital Eindhoven, Eindhoven, The Netherlands

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• Gennaro Nappo
• , Poya Ghorbani
• , Giuseppe Malleo
• , Francesco Lancelotti
• , Niccolò Napoli
• , Stuart Robinson
• , Khalid Khalil
• , Alejandro Ramirez-Del Val
• , Matthew C. M. Mortimer
• , Bilal Al-Sarireh
• , Ye Xin Koh
• , Ricky Bhogal
• , Alejandro Serrablo
• , Brice Gayet
• , Karin Johansen
• , Mark Ramaekers
•  & Alessandro Giani

Corresponding authors

Correspondence to Bas A. Uijterwijk MD or Mohammed Abu Hilal MD, PhD .

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For Misha Luyer, Medtronic and Galvani grants were paid to the institution (Catharina Hospital Eindhoven). Mario Serradilla participated in relevant financial activities for Baxter Healthcare S.L. outside the submitted work. The remaining authors have no conflicts of interest.

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Uijterwijk, B.A., Lemmers, D.H., Fusai, G.K. et al. Differences in Lymph Node Metastases Patterns Among Non-pancreatic Periampullary Cancers and Histologic Subtypes: An International Multicenter Retrospective Cohort Study and Systematic Review. Ann Surg Oncol (2024). https://doi.org/10.1245/s10434-024-15213-z

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Received : 09 October 2023

Accepted : 09 March 2024

Published : 11 April 2024

DOI : https://doi.org/10.1245/s10434-024-15213-z

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