Rikke Sand Andersen

Patient delay in cancer studies: a discussion of methods and measures

BackgroundThere is no validated way of measuring the prevalence and duration of patient delay, and we do not know how people perceive and define the time intervals they are asked to report in patient delay studies. This lack of a validated measure hampers research in patient delay and is counterproductive to efforts directed at securing early diagnosis of cancer.DiscussionThe main argument of the present paper is that current studies on patient delay do not sufficiently consider existing theories on symptom interpretation. It is illustrated that the interpretation of bodily sensations as symptoms related to a specific cancer diagnosis is embedded within a social and cultural context. We therefore cannot assume that respondents define delay periods in identical ways.SummaryIn order to improve the validity of patient delay studies, it is suggested that research be strengthened on three counts: More research should be devoted to symptom interpretation processes, more research should seek to operationalise patient delay, and, importantly, more research is needed to develop valid instruments for measuring patient delay.

'Containment' as an analytical framework for understanding patient delay: A qualitative study of cancer patients' symptom interpretation processes

Recent decades have seen much variation in survival and mortality among European cancer patients, with rather small increases in survival, especially among patients in UK and Denmark. This poor outcome has been ascribed tentatively to patient delay since an estimated 20-25% of all cancer patients report having experienced cancer-related symptoms for more than three months before seeking care. In this article we analyse semi-structured interviews with 30 adult Danish cancer patients and their families. Special focus is given to symptom interpretation processes, and how these processes potentially delay care-seeking decisions. The paper adopts a contextual approach inspired mainly by the sociologist Alonzos (1979, 1984) concept of containment. Alonzos theory is supplemented with recent anthropological and sociological literature on how people establish the relation between bodily sensations and symptoms and decide how to respond adequately to these. We present an analysis illustrating that bodily sensations and symptoms are potentially contained in a dynamic interplay of factors related to specific social situations, life biographies and life expectations and their accordance with culturally acceptable values and explanations. Finally, we discuss the implications of the analysis for future studies on patient delay.

Does the organizational structure of health care systems influence care-seeking decisions? A qualitative analysis of Danish cancer patients' reflections on care-seeking

Abstract Objective. The absence of a more significant improvement in cancer survival in countries such as the UK and Denmark may be partly rooted in delayed care-seeking among cancer patients. Past research on patient delay has mainly focused on patient characteristics (e.g. sociodemographic and psychological factors and symptom recognition) as causes of delayed care-seeking, while few studies have examined how the organizational structure of health care systems may influence patients’ reflections on seeking care. The aim of this study was to explore this relationship. Design. The analysis presented is based on semi-structured interviews with 30 cancer patients and their families. Results. The article raises two hypotheses on the relationship between structural elements of a health care system and peoples reflections on seeking health care: (1) Gatekeeping introduces an asymmetrical relationship between the patient and the GP which potentially results in self-restricting care-seeking, (2) Continuity in the doctor–patient relationship may negatively influence patient reflections on access to health care, as the focus shifts from the medical issues of the consultation to reflections on how to properly interact with the GP and the system in which she/he is situated. Conclusion. It is concluded that these hypotheses form a sound basis for further primary care research on how the organizational structure of health care systems influences patient reflections on access to medical care.

The Danish Symptom Cohort: Questionnaire and Feasibility in the Nationwide Study on Symptom Experience and Healthcare-Seeking among 100 000 Individuals

Introduction. In order to develop strategies to prevent delay in diagnosis, it is important to gain knowledge of symptoms and healthcare-seeking processes in the population. This paper describes a combined survey and register-based study with (1) focus on development of a questionnaire concerning experience of symptoms and subsequent consequences and (2) feasibility of the study. Methods. The study is a nationwide cohort study of 100 000 individuals randomly selected from the Danish general population. A comprehensive questionnaire concerning experience of symptoms and subsequent consequences was developed. The methodological framework for the development included defining the domains to be measured, identification of previous items, scales and questionnaires in the literature, and pilot and field testing. Results. A total of five domains and 16 subdomains were defined covering the area of symptom experience, symptom characteristics, reaction in response to symptom experience, external factors, and personality characteristics with potential influence on the symptom experience. In total, 49 706 questionnaires were completed, yielding a response rate of 52.2%. Conclusion. We developed a comprehensive questionnaire used in a large combined survey and register-based study concerning experience of symptoms and subsequent consequences of symptom experiences. We succeeded in conducting a large survey providing the groundwork for The Danish Symptom Cohort.

The importance of contextualization. Anthropological reflections on descriptive analysis, its limitations and implications

This paper regards a concern for the quality of analyses made on the basis of qualitative interviews in some parts of qualitative health research. Starting with discussions departing in discussions on studies exploring ‘patient delay’ in healthcare seeking, it is argued that an implicit and simplified notion of causality impedes reflexivity on social context, on the nature of verbal statements and on the situatedness of the interview encounter. Further, the authors suggest that in order to improve the quality of descriptive analyses, it is pertinent to discuss the relationship between notions of causality and the need for contextualization in particular. This argument targets several disciplines taking a qualitative approach, including medical anthropology. In particular, researchers working in interdisciplinary fields face the demands of producing knowledge ready to implement, and such demands challenge basic notions of causality and explanatory power. In order to meet these, the authors suggest an analytic focus on process causality linked to contextualization.

Juggling efficiency. An ethnographic study exploring healthcare seeking practices and institutional logics in Danish primary care settings

This article explores the mutually constituting relationship between healthcare seeking practices and the socio-political context of clinical encounters. On the basis of ethnographic fieldwork carried out in the context of Danish primary care (general practice) and inspired by recent writings on institutional logics, we illustrate how a logic of efficiency organise and give shape to healthcare seeking practices as they manifest in local clinical settings. Overall, patient concerns are reconfigured to fit the local clinical setting and healthcare professionals and patients are required to juggle efficiency in order to deal with uncertainties and meet more complex or unpredictable needs. Lastly, building on the empirical case of cancer diagnostics, we discuss the implications of the pervasiveness of the logic of efficiency in the clinical setting and argue that provision of medical care in todays primary care settings requires careful balancing of increasing demands of efficiency, greater complexity of biomedical knowledge and consideration for individual patient needs.

Global Health Care–seeking Discourses Facing Local Clinical Realities: Exploring the Case of Cancer

Using cancer as an example and drawing on Pierre Bourdieus concepts of field and on prolonged fieldwork in Danish general medical practice settings, we examine how discourses about what counts as legitimate help-seeking practices are negotiated in local clinical encounters. Overall, we identify competition between two discourses on help-seeking practices. This competition is present most when people seek help with unspecific, vague, or diffuse illness complaints, voicing uncertainty as to what counts as signs of illness, characteristic of proactive discourses emanating from global, scientific biomedicine. Such indistinct help-seeking conflicts with the dominant discourse in the local clinical setting and is characterized by an overt focus on identification of the chief complaint. The analysis illustrates how competing discourses may result in conflicting expectations to the clinical encounter and prove counterproductive to ensuring early diagnosis of cancer.

Towards a clinically useful diagnosis for mild-to-moderate conditions of medically unexplained symptoms in general practice: a mixed methods study

BackgroundSymptoms that cannot be attributed to any known conventionally defined disease are highly prevalent in general practice. Yet, only severe cases are captured by the current diagnostic classifications of medically unexplained symptoms (MUS). This study explores the clinical usefulness of a proposed new diagnostic category for mild-to-moderate conditions of MUS labelled ‘multiple symptoms’.MethodsA mixed methods approach was used. For two weeks, 20 general practitioners (GPs) classified symptoms presented in consecutive consultations according to the International Classification of Primary Care (ICPC) supplemented with the new diagnostic category ‘multiple symptoms’. The GPs’ experiences were subsequently explored by focus group interviews. Interview data were analysed according to ethnographic principles.ResultsIn 33% of patients, GPs classified symptoms as medically unexplained, but applied the category of ‘multiple symptoms’ only in 2.8%. The category was described as a useful tool for promoting communication and creating better awareness of patients with MUS; as such, the category was perceived to reduce the risk of unnecessary tests and referrals of these patients. Three main themes were found to affect the clinical usefulness of the diagnostic category of ‘multiple symptoms’: 1) lack of consensus on categorisation practices, 2) high complexity of patient cases and 3) relational continuity (i.e. continuity in the doctor-patient relationship over time). The first two were seen as barriers to usefulness, the latter as a prerequisite for application. The GPs’ diagnostic classifications were found to be informed by the GPs’ subjective pre-formed concepts of patients with MUS, which reflected more severe conditions than actually intended by the new category of ‘multiple symptoms’.ConclusionsThe study demonstrated possible clinical benefits of the category of ‘multiple symptoms’, such as GPs’ increased awareness and informational continuity in partnership practices. The use of the category was challenged by the GPs’ conceptual understanding of MUS and was applied only to a minority of patients. The study demonstrates a need for addressing these issues if sub-threshold categories for MUS are to be applied in routine care. The category of ‘multiple symptoms’ may profitably be used in the future as a risk indicator rather than a diagnostic category.

Resisting "Reason": A Comparative Anthropological Study of Social Differences and Resistance toward Health Promotion and Illness Prevention in Denmark.

Social differences in health and illness are well documented in Denmark. However, little is known about how health practices are manifested in the everyday lives of different social classes. We propose acts of resistance and formation of health subjectivities as helpful concepts to develop our understanding of how dominant health discourses are appropriated by different social classes and transformed into different practices promoting health and preventing illness. Based on fieldwork in two different social classes, we discuss how these practices both overtly and subtly challenge the normative power of the health promotion discourse. These diverse and ambiguous forms of everyday resistance illustrate how and when situated concerns move social actors to subjectively appropriate health promotion messages. Overall, the different forms of resistance elucidate how the standardized awareness and education campaigns may perpetuate the very inequalities they try to diminish.

Sharing or not sharing? Balancing uncertainties after cancer in urban Norway

In this article we explore the uncertainties of living in the aftermath of cancer treatment within the context of the Norwegian welfare state. Serious illnesses confront people with the uncertainty of life itself. We suggest that managing this form of existential uncertainty is inherently a social process and their considerations of whether or not to share worries are part of the everyday management of social relationships. We refer to this process of managing uncertainty and the social processes intrinsic to it as an act of ‘balancing’. We draw on data from repeated interviews with eight former cancer patients in a Northern Norwegian city carried between January 2014 and January 2015. Through our inquiry into who was involved in the participants’ interpretation of bodily sensations, health and care seeking, we found that the participants were keeping most of their uncertainties to themselves. Their main argument was that they did not want to make others worry unnecessarily. On the other hand, participants talked about the need and expectation that relevant others had to be informed and involved and the participants also described needing an outlet through being able to share worries. These needs and concerns were balanced within a wish to maintain ‘normal everyday life’ as far as possible.