General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qua
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《英国医生杂志》
1 Department of Public Health and Policy, London School of Hygiene and Tropical Medicine, London WC1E 7HT, 2 Imperial College of Science, Technology and Medicine, West Middlesex University Hospital, Isleworth TW7 6AF
Correspondence to: R Raine rosalind.raine@lshtm.ac.uk
Abstract
Objectives To compare general practitioners' perceptions of chronic fatigue syndrome and irritable bowel syndrome and to consider the implications of their perceptions for treatment.
Design Qualitative analysis of transcripts of group discussions.
Participants and setting A randomly selected sample of 46 general practitioners in England.
Results The participants tended to stereotype patients with chronic fatigue syndrome as having certain undesirable traits. This stereotyping was due to the lack of a precise bodily location; the reclassification of the syndrome over time; transgression of social roles, with patients seen as failing to conform to the work ethic and "sick role" and conflict between doctor and patient over causes and management. These factors led to difficulties for many general practitioners in managing patients with chronic fatigue syndrome. For both conditions many participants would not consider referral for mental health interventions, even though the doctors recognised social and psychological factors, because they were not familiar with the interventions or thought them unavailable or unnecessary.
Conclusions Barriers to the effective clinical management of patients with irritable bowel syndrome and chronic fatigue syndrome are partly due to doctors' beliefs, which result in negative stereotyping of patients with chronic fatigue syndrome and the use of management strategies for both syndromes that may not take into account the best available evidence.
Introduction
Sample
The study arose out of a programme of research into factors affecting group decision making for the development of clinical guidelines. A random sample of clinicians from throughout England were invited to participate in research into the process and outcomes of decision making by first completing a questionnaire and then attending a nominal group meeting to discuss their views. (Nominal groups are a formal method for eliciting opinions in a transparent and explicit way and are often used in the development of clinical guidelines.) We used computer generated random numbers to select individuals from the Department of Health's general practitioner database.11 Each individual was randomly selected without being replaced. The aim was to establish 16 nominal groups of 11 participants, some comprising only general practitioners, others also including psychiatrists and other mental health specialists (sampled from databases of mental health professionals). Assuming a response rate of 4% (based on the response rate for the first group) and a provisional group size of 14 participants, to allow for attrition, we initially invited 350 general practitioners to take part in each nominal group meeting. A total of 135 general practitioners and 42 mental health professionals participated in the programme. A subset of nominal groups comprising only general practitioners was chosen for this analysis. No new major themes had emerged after analysis of the transcripts of four of the nominal groups, implying that theoretical saturation had been reached. The four groups analysed in this paper met between February and October 2002, and by the time the groups met they comprised between nine and 12 doctors.
Procedure
The participants were each sent a series of clinical scenarios involving patients with chronic fatigue syndrome or irritable bowel syndrome—for example, one scenario concerned the appropriateness of behavioural therapy in a patient who believes that chronic fatigue syndrome has an organic cause. The doctors were asked to rate their level of agreement with using mental health interventions. Two of the four groups were also given a systematic review of the effectiveness of mental health interventions for chronic fatigue syndrome and irritable bowel syndrome. The participants of each group met for a facilitated discussion where they explored any differences in opinion for each of the scenarios in turn. Each meeting lasted approximately four hours, giving sufficient time to explore in depth all the issues raised and to clarify any ambiguities. The meetings were audiotaped and later transcribed. In addition, field notes were written by one of the authors (RR), who kept a non-attributed "journal" of the group processes. The first group was facilitated by one author (NB) and the rest of the groups by another (RR), but all discussions were conducted according to a protocol. The protocol was written by two of the authors (RR and NB), one of whom (NB) had extensive experience in facilitating nominal groups. The protocol comprised a description of the nominal group process to be followed, instructions to be given to each group, and explanations of the terms used in the questionnaire. The meetings were all held at the same venue.
Analysis of transcripts
The analysis of the transcribed data involved independent scrutiny by two of the authors (RR and SC) of the initial transcripts and journal notes to draw up a preliminary list of themes. The two authors then met to compare and discuss identified themes. These interpretations were also appraised by the other authors. We used a variant of grounded theory in which we firstly identified provisional themes by using the respondents' own concepts. We then used these themes iteratively, applying them to later transcripts to allow the emergence of an analytical theory suited to the context.12 In particular, we used a representational approach that allowed analysis of participants' discussions of the potential tensions and ambiguities in their roles as general practitioners.13 We were constantly vigilant for deviant cases that might question the emerging thematic and conceptual relations. This form of analysis, together with the use of the scenarios, allowed us insights into how the participating general practitioners responded to the key institutional and cultural conditions relevant to them.13
Results
Methodological considerations
We used our sampling method in preference to purposive sampling to meet the requirements of the larger research programme of which this study was part. This method allowed us to ascertain beliefs and views of a range of general practitioners from a variety of practices. We maintained rigour at every level of analysis—from the conduct of the nominal groups, through the transcription and initial data coding, to final analysis—by a thorough contextualisation of data extracts, a reflexive thematic analysis involving attention to all perspectives, and careful attention to deviant cases. The written protocol minimised any potential investigator bias. The themes that emerged from the analysis of the initial four transcripts were examined against field notes taken in the other 12 groups to confirm the findings reported here. We consider the insights and concepts developed to be widely applicable to general practitioners across the United Kingdom.17 18
Other studies
Previous research has shown that doctors tend to negatively stereotype patients who deviate from the sick role.19 Patients with chronic fatigue syndrome have been described as excessively fixated on illness, leading to doubts about the diagnosis.6 20 It has also been argued that pressure groups influence clinical encounters.21 These influences may make it harder for doctors to legitimise the symptoms of chronic fatigue syndrome.
Consultations have poorer outcomes when patients openly disagree with their doctors.22 Our findings support this research, indicating that where doctors find it difficult to make a satisfactory diagnosis or are influenced by negative encounters with patients difficulties in management are likely to escalate, potentially creating a vicious spiral of alienation between doctor and patient.
Implications
Effective clinical management at least partly depends on the development of a collaborative doctor-patient relationship.23-25 For chronic fatigue syndrome and irritable bowel syndrome, effective management includes discussion about mental health interventions, particularly for patients who have responded poorly to other management options.3 8 Our findings indicate that general practitioners' perceptions about patients with either condition may be a barrier to the implementation of mental health approaches. To overcome these barriers doctors must recognise their deeply held beliefs that mediate their understandings of complex disease mechanisms. Only then can they engage with a complex, multifactorial model of illness and its implications for treatment. Such a change in perceptions will need to be supplemented by the establishment of locally available effective interventions.
What is already known
General practitioners are more uncertain or dismissive than they are of irritable bowel chronic fatigue syndrome syndrome
Mental health interventions may of be effective for patients with chronic fatigue syndrome or irritable bowel syndrome who don't respond to management of symptoms in primary care
What this study adds
Differences in general practitioners' perceptions of the two conditions are due, in chronic fatigue syndrome, to the lack of a precise bodily location of the illness, the changing classification of the syndrome over time, patients' transgression of the sick role and lack of stoicism, and conflict with doctors over management
Even when doctors recognise psychological or social factors, many do not consider referral for mental health interventions because they are unfamiliar with the interventions or think them unavailable or unnecessary
This study is part of a research programme examining the methodology of group decision making for the development of clinical guidelines, funded by the Medical Research Council. This programme is overseen by a steering committee comprising SC, NB, TS, Andy Haines, Colin Sanderson, and Theresa Marteau. Andy Haines also provided valuable comments on the drafts of this paper. We thank Kirsten Larkin for formatting the questionnaire, providing administrative support, recording the meetings, and transcribing the data. We thank the general practitioners who took part in the study.
RR and NB designed the study. RR collected the data, with the help of Kirsten Larkin, and did the analysis, with SC. All authors contributed to the interpretation of the data. RR drafted the paper, and all authors critically revised it.
Funding: None.
Competing interests: None declared.
Ethical approval: Not needed.
References
CFS/ME Working Group. A report of the CFS/ME Working Group: report to the chief medical officer of an independent working group. London, CFS/ME Working Group, 2002. www.publications.doh.gov.uk/cmo/cfsmereport (accessed 24 Apr 2004)
Talley N, Spiller R. Irritable bowel syndrome: a little understood organic bowel disease? Lancet 2002;60: 555-64.
Guthrie E, Thompson D. ABC of psychological medicine: abdominal pain and functional gastrointestinal disorders. BMJ 2002;325: 701-3.
Wessely S, Nimnuan C, Sharpe M. Functional somatic syndromes: one or many? Lancet 1999;354: 936-9.
Ho-Yen D, McMara I. General practitioners' experience of the chronic fatigue syndrome. Br J Gen Pract 1991;41: 324-6.
Asbring P, Narvanen A. Ideal versus reality: physicians perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia. Soc Sci Med 2003;57: 711-20.
Thompson G, Heaton K, Smyth T, Smyth C. Irritable bowel syndrome: the view from general practice. Eur J Gastroenterol Hepatol 1997;9: 689-92.
Raine R, Haines A, Sensky T, Hutchings A, Larkin K, Black N. Systematic review for mental health interventions for patients with common somatic symptoms: can research evidence from secondary care be extrapolated to primary care? BMJ 2002;35: 1082.
Dixon-Woods M, Critchley S. Medical and lay views of irritable bowel syndrome. Fam Pract 2000;17: 108-13.
Heitkemper M, Carter E, Ameen V, Olden K, Cheng L. Women with irritable bowel syndrome. Differences in patients' and physicians' perceptions. Gastroenterol Nurs 2002;25: 192-200.
SPSS. SPSS Base 10.0 for Windows User's Guide. Chicago: SPSS, 1999.
Green J. Grounded theory and constant comparative method. BMJ 1998;316: 1064-5.
Michael M, Grinyer A, Turner J. Teachers in biotechnology: identity in the context of ignorance and knowledgeability. Public Underst Sci 1997;6: 1-17.
Parsons T. The social system. London: Routledge & Kegan Paul, 1951.
Frank A. From sick role to health role: deconstructing Parsons. In: Robertson R, Turner B, eds. Theories of modernity. London: Sage, 1991.
Shilling C. Culture, the "sick role" and the consumption of health. Br J Sociol 2002;53: 621-38.
Green J. Generalisability and validity in qualitative research . BMJ 1999;319: 421.
Fuat A, Hungin P, Murphy J. Barriers to accurate diagnosis and effective management of heart failure in primary care: qualitative study. BMJ 2003;326: 883.
Najman J, Klein D, Munro C. Patient characteristics negatively stereotyped by doctors. Soc Sci Med 1982;16: 1781-2.
Asbring P, Narvanen A. Women's experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia. Qual Health Res 2002;12: 148-60.
Banks J, Prior L. Doing things with illness: the micro politics of the CFS clinic. Soc Sci Med 2001;52: 11-23.
Barry C, Bradley C, Britten N, Stevenson F, Barber N. Patients' unvoiced agendas in general practice consultations: qualitative study. BMJ 2000;320: 1246-50.
Deale A, Wessely S. Patients' perceptions of medical care in chronic fatigue syndrome. Soc Sci Med 2001;52: 1859-64.
Ax S, Gregg V, Jones D. Chronic fatigue syndrome: sufferers' evaluation of medical support received. J R Soc Med 1997;90: 250-4.
Downes-Grainger E, Morriss R, Gask L, Faragher B. Clinical factors associated with short-term changes in outcome of patients with somatized mental disorder in primary care. Psychol Med 1998;28: 703-11.(Rosalind Raine, MRC clini)
Correspondence to: R Raine rosalind.raine@lshtm.ac.uk
Abstract
Objectives To compare general practitioners' perceptions of chronic fatigue syndrome and irritable bowel syndrome and to consider the implications of their perceptions for treatment.
Design Qualitative analysis of transcripts of group discussions.
Participants and setting A randomly selected sample of 46 general practitioners in England.
Results The participants tended to stereotype patients with chronic fatigue syndrome as having certain undesirable traits. This stereotyping was due to the lack of a precise bodily location; the reclassification of the syndrome over time; transgression of social roles, with patients seen as failing to conform to the work ethic and "sick role" and conflict between doctor and patient over causes and management. These factors led to difficulties for many general practitioners in managing patients with chronic fatigue syndrome. For both conditions many participants would not consider referral for mental health interventions, even though the doctors recognised social and psychological factors, because they were not familiar with the interventions or thought them unavailable or unnecessary.
Conclusions Barriers to the effective clinical management of patients with irritable bowel syndrome and chronic fatigue syndrome are partly due to doctors' beliefs, which result in negative stereotyping of patients with chronic fatigue syndrome and the use of management strategies for both syndromes that may not take into account the best available evidence.
Introduction
Sample
The study arose out of a programme of research into factors affecting group decision making for the development of clinical guidelines. A random sample of clinicians from throughout England were invited to participate in research into the process and outcomes of decision making by first completing a questionnaire and then attending a nominal group meeting to discuss their views. (Nominal groups are a formal method for eliciting opinions in a transparent and explicit way and are often used in the development of clinical guidelines.) We used computer generated random numbers to select individuals from the Department of Health's general practitioner database.11 Each individual was randomly selected without being replaced. The aim was to establish 16 nominal groups of 11 participants, some comprising only general practitioners, others also including psychiatrists and other mental health specialists (sampled from databases of mental health professionals). Assuming a response rate of 4% (based on the response rate for the first group) and a provisional group size of 14 participants, to allow for attrition, we initially invited 350 general practitioners to take part in each nominal group meeting. A total of 135 general practitioners and 42 mental health professionals participated in the programme. A subset of nominal groups comprising only general practitioners was chosen for this analysis. No new major themes had emerged after analysis of the transcripts of four of the nominal groups, implying that theoretical saturation had been reached. The four groups analysed in this paper met between February and October 2002, and by the time the groups met they comprised between nine and 12 doctors.
Procedure
The participants were each sent a series of clinical scenarios involving patients with chronic fatigue syndrome or irritable bowel syndrome—for example, one scenario concerned the appropriateness of behavioural therapy in a patient who believes that chronic fatigue syndrome has an organic cause. The doctors were asked to rate their level of agreement with using mental health interventions. Two of the four groups were also given a systematic review of the effectiveness of mental health interventions for chronic fatigue syndrome and irritable bowel syndrome. The participants of each group met for a facilitated discussion where they explored any differences in opinion for each of the scenarios in turn. Each meeting lasted approximately four hours, giving sufficient time to explore in depth all the issues raised and to clarify any ambiguities. The meetings were audiotaped and later transcribed. In addition, field notes were written by one of the authors (RR), who kept a non-attributed "journal" of the group processes. The first group was facilitated by one author (NB) and the rest of the groups by another (RR), but all discussions were conducted according to a protocol. The protocol was written by two of the authors (RR and NB), one of whom (NB) had extensive experience in facilitating nominal groups. The protocol comprised a description of the nominal group process to be followed, instructions to be given to each group, and explanations of the terms used in the questionnaire. The meetings were all held at the same venue.
Analysis of transcripts
The analysis of the transcribed data involved independent scrutiny by two of the authors (RR and SC) of the initial transcripts and journal notes to draw up a preliminary list of themes. The two authors then met to compare and discuss identified themes. These interpretations were also appraised by the other authors. We used a variant of grounded theory in which we firstly identified provisional themes by using the respondents' own concepts. We then used these themes iteratively, applying them to later transcripts to allow the emergence of an analytical theory suited to the context.12 In particular, we used a representational approach that allowed analysis of participants' discussions of the potential tensions and ambiguities in their roles as general practitioners.13 We were constantly vigilant for deviant cases that might question the emerging thematic and conceptual relations. This form of analysis, together with the use of the scenarios, allowed us insights into how the participating general practitioners responded to the key institutional and cultural conditions relevant to them.13
Results
Methodological considerations
We used our sampling method in preference to purposive sampling to meet the requirements of the larger research programme of which this study was part. This method allowed us to ascertain beliefs and views of a range of general practitioners from a variety of practices. We maintained rigour at every level of analysis—from the conduct of the nominal groups, through the transcription and initial data coding, to final analysis—by a thorough contextualisation of data extracts, a reflexive thematic analysis involving attention to all perspectives, and careful attention to deviant cases. The written protocol minimised any potential investigator bias. The themes that emerged from the analysis of the initial four transcripts were examined against field notes taken in the other 12 groups to confirm the findings reported here. We consider the insights and concepts developed to be widely applicable to general practitioners across the United Kingdom.17 18
Other studies
Previous research has shown that doctors tend to negatively stereotype patients who deviate from the sick role.19 Patients with chronic fatigue syndrome have been described as excessively fixated on illness, leading to doubts about the diagnosis.6 20 It has also been argued that pressure groups influence clinical encounters.21 These influences may make it harder for doctors to legitimise the symptoms of chronic fatigue syndrome.
Consultations have poorer outcomes when patients openly disagree with their doctors.22 Our findings support this research, indicating that where doctors find it difficult to make a satisfactory diagnosis or are influenced by negative encounters with patients difficulties in management are likely to escalate, potentially creating a vicious spiral of alienation between doctor and patient.
Implications
Effective clinical management at least partly depends on the development of a collaborative doctor-patient relationship.23-25 For chronic fatigue syndrome and irritable bowel syndrome, effective management includes discussion about mental health interventions, particularly for patients who have responded poorly to other management options.3 8 Our findings indicate that general practitioners' perceptions about patients with either condition may be a barrier to the implementation of mental health approaches. To overcome these barriers doctors must recognise their deeply held beliefs that mediate their understandings of complex disease mechanisms. Only then can they engage with a complex, multifactorial model of illness and its implications for treatment. Such a change in perceptions will need to be supplemented by the establishment of locally available effective interventions.
What is already known
General practitioners are more uncertain or dismissive than they are of irritable bowel chronic fatigue syndrome syndrome
Mental health interventions may of be effective for patients with chronic fatigue syndrome or irritable bowel syndrome who don't respond to management of symptoms in primary care
What this study adds
Differences in general practitioners' perceptions of the two conditions are due, in chronic fatigue syndrome, to the lack of a precise bodily location of the illness, the changing classification of the syndrome over time, patients' transgression of the sick role and lack of stoicism, and conflict with doctors over management
Even when doctors recognise psychological or social factors, many do not consider referral for mental health interventions because they are unfamiliar with the interventions or think them unavailable or unnecessary
This study is part of a research programme examining the methodology of group decision making for the development of clinical guidelines, funded by the Medical Research Council. This programme is overseen by a steering committee comprising SC, NB, TS, Andy Haines, Colin Sanderson, and Theresa Marteau. Andy Haines also provided valuable comments on the drafts of this paper. We thank Kirsten Larkin for formatting the questionnaire, providing administrative support, recording the meetings, and transcribing the data. We thank the general practitioners who took part in the study.
RR and NB designed the study. RR collected the data, with the help of Kirsten Larkin, and did the analysis, with SC. All authors contributed to the interpretation of the data. RR drafted the paper, and all authors critically revised it.
Funding: None.
Competing interests: None declared.
Ethical approval: Not needed.
References
CFS/ME Working Group. A report of the CFS/ME Working Group: report to the chief medical officer of an independent working group. London, CFS/ME Working Group, 2002. www.publications.doh.gov.uk/cmo/cfsmereport (accessed 24 Apr 2004)
Talley N, Spiller R. Irritable bowel syndrome: a little understood organic bowel disease? Lancet 2002;60: 555-64.
Guthrie E, Thompson D. ABC of psychological medicine: abdominal pain and functional gastrointestinal disorders. BMJ 2002;325: 701-3.
Wessely S, Nimnuan C, Sharpe M. Functional somatic syndromes: one or many? Lancet 1999;354: 936-9.
Ho-Yen D, McMara I. General practitioners' experience of the chronic fatigue syndrome. Br J Gen Pract 1991;41: 324-6.
Asbring P, Narvanen A. Ideal versus reality: physicians perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia. Soc Sci Med 2003;57: 711-20.
Thompson G, Heaton K, Smyth T, Smyth C. Irritable bowel syndrome: the view from general practice. Eur J Gastroenterol Hepatol 1997;9: 689-92.
Raine R, Haines A, Sensky T, Hutchings A, Larkin K, Black N. Systematic review for mental health interventions for patients with common somatic symptoms: can research evidence from secondary care be extrapolated to primary care? BMJ 2002;35: 1082.
Dixon-Woods M, Critchley S. Medical and lay views of irritable bowel syndrome. Fam Pract 2000;17: 108-13.
Heitkemper M, Carter E, Ameen V, Olden K, Cheng L. Women with irritable bowel syndrome. Differences in patients' and physicians' perceptions. Gastroenterol Nurs 2002;25: 192-200.
SPSS. SPSS Base 10.0 for Windows User's Guide. Chicago: SPSS, 1999.
Green J. Grounded theory and constant comparative method. BMJ 1998;316: 1064-5.
Michael M, Grinyer A, Turner J. Teachers in biotechnology: identity in the context of ignorance and knowledgeability. Public Underst Sci 1997;6: 1-17.
Parsons T. The social system. London: Routledge & Kegan Paul, 1951.
Frank A. From sick role to health role: deconstructing Parsons. In: Robertson R, Turner B, eds. Theories of modernity. London: Sage, 1991.
Shilling C. Culture, the "sick role" and the consumption of health. Br J Sociol 2002;53: 621-38.
Green J. Generalisability and validity in qualitative research . BMJ 1999;319: 421.
Fuat A, Hungin P, Murphy J. Barriers to accurate diagnosis and effective management of heart failure in primary care: qualitative study. BMJ 2003;326: 883.
Najman J, Klein D, Munro C. Patient characteristics negatively stereotyped by doctors. Soc Sci Med 1982;16: 1781-2.
Asbring P, Narvanen A. Women's experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia. Qual Health Res 2002;12: 148-60.
Banks J, Prior L. Doing things with illness: the micro politics of the CFS clinic. Soc Sci Med 2001;52: 11-23.
Barry C, Bradley C, Britten N, Stevenson F, Barber N. Patients' unvoiced agendas in general practice consultations: qualitative study. BMJ 2000;320: 1246-50.
Deale A, Wessely S. Patients' perceptions of medical care in chronic fatigue syndrome. Soc Sci Med 2001;52: 1859-64.
Ax S, Gregg V, Jones D. Chronic fatigue syndrome: sufferers' evaluation of medical support received. J R Soc Med 1997;90: 250-4.
Downes-Grainger E, Morriss R, Gask L, Faragher B. Clinical factors associated with short-term changes in outcome of patients with somatized mental disorder in primary care. Psychol Med 1998;28: 703-11.(Rosalind Raine, MRC clini)