Family Practice Advance Access originally published online on April 1, 2005
Family Practice 2005 22(4):389-393; doi:10.1093/fampra/cmi019
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Chronic Fatigue Syndrome: a survey of GPs' attitudes and knowledge
a Health Protection Agency Primary Care Unit, Gloucester, b University of the West of England, Bristol and c Health Protection Agency Communicable Disease and Surveillance Centre Statistics Unit, London, UK.
Correspondence to Miss Jo Bowen, Health Protection Agency, Primary Care Unit, Gloucestershire Royal Hospital, Great Western Road, Gloucester GL1 3NN; Email: jill.whiting{at}hpa.org.uk
Received 19 April 2004; Accepted 5 February 2005.
Bowen J, Pheby D, Charlett A and McNulty C. Chronic Fatigue Syndrome: a survey of GPs' attitudes and knowledge. Family Practice 2005; 22: 389393.
| Abstract |
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Background. GPs need evidence and guidance to help them diagnose and manage Chronic Fatigue Syndrome (CFS)/ME appropriately.
Objectives. The aim of this survey was to obtain baseline data and identify the factors associated with GPs' attitudes to and knowledge of CFS/ME. The attitude of GPs to the condition is an important indicator of likely prognosis.
Methods. A postal questionnaire was sent to 1054 GPs served by Taunton, Bristol and Gloucester laboratories. GPs' attitudes to nine statements about CFS/ME were assessed and the factors associated with positive or negative responses were determined. Knowledge of the clinical features was also assessed.
Results. 811 GPs (77%) returned the questionnaire. 48% of GPs did not feel confident with making a diagnosis of CFS/ME and 41% did not feel confident in treatment. 72% of GPs accepted CFS/ME as a recognisable clinical entity and those GPs had significantly more positive attitudes. Three other key factors that were significantly, positively associated with GPs' attitudes were knowing someone socially with CFS/ME, being male and seeing more patients with the condition in the last year.
Conclusion. Despite the publication of guidance for GPs on CFS/ME, confidence with making a diagnosis and management was found to be low. Educational initiatives and guidance for GPs should stress the importance of accepting CFS/ME as a recognisable clinical entity, as this is linked to having a positive attitude and could lead to improved confidence to make a diagnosis and treat CFS/ME patients.
Keywords. Chronic Fatigue Syndrome, practice guidelines, health knowledge/attitudes/practice, questionnaires.
| Introduction |
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No satisfactory name has been agreed for the polymorphous condition known as Chronic Fatigue Syndrome (CFS), myalgic encephalomyelitis (ME) and myalgic encephalopathy. In this paper we use the composite term CFS/ME, as it was used by the Chief Medical Officer's (CMO's) CFS/ME working group and is commonly used in the literature.1 GPs find CFS/ME difficult,2,3 they need evidence and guidance to help them diagnose and manage the condition appropriately.4 The attitude of GPs to the condition is in itself an important indicator of likely prognosis.5 GPs who demonstrate empathy, acceptance of their patient's suffering, a non-judgmental style and a commitment to continued care may well be more likely to make an accurate diagnosis.6
A provisional diagnosis of CFS/ME can in itself be therapeutic for the patient and lead to health improvements.1,5,7 But diagnosis of CFS/ME can be problematic for GPs as there are no specific disease markers and no validated laboratory or other tests to confirm it. In an attempt to resolve some of the difficulties associated with diagnosis and management of this condition in the NHS, the CMO's working group was established in 1998. Although faced with a poor evidence base,8 the group achieved consensus on diagnostic and treatment advice for use in primary care.1 The working group identified a need for baseline data on health care professionals' knowledge of and attitudes towards CFS/ME. There is little published information on this subject available at present. A small Irish survey reported that GPs were not satisfied with the care delivered to CFS/ME patients9 and a larger survey of Australian GPs found that 31% did not accept it as a distinct syndrome.10 Up-to-date survey findings of UK GPs' beliefs and attitudes towards CFS/ME could not be found in the literature. The aim of this survey was to obtain such baseline data and to explore the factors associated with GPs' knowledge of and attitudes to CFS/ME.
| Methods |
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Postal questionnaire survey
In March 2002 a validated questionnaire11 was sent to 1054 GPs served by Taunton, Bristol and Gloucester microbiology laboratories. Non-responders were sent a follow-up after two months.
The questionnaire consisted mainly of closed questions and short answer open-ended questions. Respondents were asked about: agreement with nine statements about CFS/ME (five-graded response scale from strongly agree through to strongly disagree, Table 1); whether they considered CFS/ME to be a recognisable clinical entity; whether they knew anyone socially with CFS/ME; conditions excluded in making a diagnosis; laboratory investigations requested and the most frequent clinical features of CFS/ME (Table 2). There is not a definitive list of the most common clinical features of CFS/ME in the literature. Lists of diagnostic criteria designed for research12,13 were not suitable for the questionnaire as these are too narrow in scope to be used in primary care. The clinical features used in our questionnaire were developed from the CMO's working group report.1 Respondents also provided information on gender; age and how many patients with CFS/ME were seen in the previous year.
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Data analysis
Multivariable analyses were conducted to identify the factors associated with attitude and knowledge. GPs' attitudes to the nine statements about CFS/ME were scored. The score ranged from +2 (most positive) through to 2 (most negative) for each statement. Positive-sounding statements (1, 3, 5, 6 and 8, Table 1) were given a positive score where the respondent agreed and a negative score where they disagreed; whereas negative-sounding statements (2, 4, 7 and 9, Table 1) were given a positive score where the respondent disagreed and a negative score where they agreed. The total score for each GP ranged from 18 (maximum positive) to 18 (maximum negative). The proportion of positive responses to each statement was calculated and the factors which were significantly associated with these were identified (confidence intervals obtained via maximum likelihood technique). A non-parametric analysis of variance and test of trend was performed to assess whether attitudes were associated with the number of CFS/ME patients seen. The proportion of GPs selecting all three key clinical features and any of the other most frequent clinical features was calculated.
| Results |
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Questionnaire response
There was a 77% (811/1054) response rate. The mean number of CFS/ME patients that GPs had seen in the previous year was 3.5 (range 050, mode 2).
GP Attitudes to CFS/ME
90% (728/811) of GPs responded to the nine statements on attitude, 57% (413/728) had a positive score, 35% (256/728) had a negative score and 8% (59/728) were neutral (score 0, Appendix 1). GPs' responses to six of the nine attitude statements were predominantly positive. However, 48% did not feel confident with diagnosis; 41% did not feel confident in treatment and only 12% enjoyed working with CFS/ME patients. There were significantly lower proportions of positive responses given for these three statements (Appendix 2).
Factors associated with attitude to CFS
72% of GPs accepted CFS/ME as a recognisable clinical entity, 36% knew someone socially with CFS/ME and 59% were male GPs. These three factors were found to have a significant positive association with GPs' total attitude scores (P < 0.0001, P < 0.0001 and P < 0.007, respectively). Those who accepted CFS/ME as a recognisable clinical entity gave a significantly higher proportion of positive responses to all nine statements (Table 1; Appendix 3). In particular, they were around three times more positive about diagnostic confidence and around 2.5 times more positive about enjoying working with CFS/ME patients than those who did not accept CFS/ME as a recognisable clinical entity. Knowing someone socially with CFS/ME was associated with significantly more positive responses to four of the statements on attitude (Table 1; Appendix 4) and female GPs were found to give significantly fewer positive responses than male GPs (Table 1; Appendix 5). A higher proportion of positive responses were given for six of nine attitude statements by GPs who had seen more patients with CFS/ME in the last year. However, whether GPs were irritated by, feel insecure with or are filled with despair by CFS/ME patients were not associated with the number of patients seen.
Knowledge of clinical features
49% of GPs (382/786) correctly identified all three key clinical features of CFS/ME (Table 2) and 63% of GPs selected either the three key clinical features or other most frequent clinical features. Knowledge scores were independent of the factors that were associated with attitude. Good knowledge of the clinical features did not affect whether GPs felt confident in making a diagnosis or treating these patients.
Conditions excluded in diagnosis
The CMO's working group report1 proposed a list of conditions which should be excluded in making a diagnosis and these were all mentioned by GPs, except for chronic somatisation disorder (Table 3). The top three conditions GPs would exclude when making a provisional diagnosis of CFS/ME were thyroid disorders (612/811, 75%), anaemia (588/811, 73%) and mood disorders (381/811, 47%). Diabetes, Epstein-Barr virus, kidney disorders and liver disorders which are not mentioned in the CMO's working group report1 were excluded by 38%, 19%, 17% and 10% of GPs respectively.
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Laboratory testing
75% (611/811) of GPs said they requested full blood count and 67% (540/811) thyroid function tests (Table 4) in making a diagnosis of CFS/ME. When making a diagnosis, 46% believed that negative viral/atypical serology was helpful and 40% believed that positive viral/atypical serology was helpful.
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| Discussion |
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GP attitudes to CFS/ME
Despite the recent publication of care and management guidance for GPs on CFS/ME,1 confidence with making a diagnosis and management of CFS/ME was found to be low. Only 12% of GPs enjoyed working with CFS/ME patients.
This study found that 28% of GPs did not accept CFS/ME as a recognisable clinical entity, despite the CMO's assertions in 1998 that it was a real entity.1 GPs who did accept CFS/ME as a recognisable clinical entity tended to have more positive attitudes which have been shown to improve patient outcomes.6,7 Knowing someone socially with CFS/ME also had a positive effect on GPs' attitudes, as did seeing more patients with the condition in the previous year. It is uncertain why female GPs' attitudes were less positive than male GPs; both had seen similar numbers of patients in the previous year.
Conditions excluded in diagnosis
The CMO's working group report1 recommended that provisional diagnosis of CFS/ME should rely on symptom recognition coupled with exclusion of conditions with similar symptoms and provided a list of such conditions. Although diabetes is not listed in the CMO's working group report1 it was the fourth most common condition to be excluded when GPs managed these patients. In the light of this finding, exclusion of diabetes should be considered in any review of these guidelines.
Laboratory tests performed
Viral/atypical serology tests were performed by 23% of GPs and 11% specifically tested for Epstein-Barr virus. This is discordant with the guidelines we have found on diagnosis of CFS/ME,7,14,15 which do not recommend viral/atypical serology testing. This could be addressed by laboratory-use guidance and appropriate automated comments on laboratory serology reports.
Strengths and weaknesses
A main strength of the study was the high response rate to the questionnaire (77%) which means these findings should be representative of GPs. These findings complement a qualitative study which found that negative stereotyping of CFS/ME patients by some GPs may lead to difficulties with management.3
We do not have information about non-responders but it is possible they were less interested in CFS/ME, therefore, the mean number of CFS/ME patients seen in the previous year may be higher in the survey respondents than in the total GP population. As we did not ask GPs about their attitudes to other medical conditions we do not know whether their responses are specific to CFS/ME or whether they would have been similar for other chronic illnesses seen in primary care. The topic areas highlighted by this study could be explored further using qualitative methods.
Suggestions to resolve issues raised in this research
The CMO's working group report on CFS/ME1 was met with both praise and criticism by the professional community.16,17 The working group report was too long for GPs, who need to rationalise the time spent on any particular set of guidance.18 Incorporating the CMO's working group report into a specific educational programme may have improved it's implementation by GPs in practice.19
It has been suggested that patients' who felt their GP consultation was patient-centred had improved health status and a lower rate of diagnostic tests and referrals.20 Educational initiatives and guidance for GPs should stress patients' involvement20 and also the importance of accepting CFS/ME as a recognisable clinical entity. This is linked to having a positive attitude which could lead to improved confidence to make a diagnosis and treat CFS/ME patients. Initiatives that emulate first-hand experience of CFS/ME, such as case studies and role plays, could also help to foster more positive attitudes.
| Declaration |
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Funding: the study was funded by the Health Protection Agency Primary Care Unit.
Ethical approval: granted by the local research ethics committees for Bristol (LREC 5278), Gloucester (LREC 01/161G) and West Somerset (LREC 13.3).
Conflicts of interest: Dr Derek Pheby was secretary of the Chief Medical Officer's CFS/ME working group. There are no conflicts of interest for the other authors.
| Appendix 1: |
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Frequency distribution of GPs' total attitude scores
| Appendix 2: |
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Proportion of positive responses from GPs to attitude statements. Estimates with confidence intervals greater than 0.5 have a significantly higher proportion of positive responses.
| Appendix 3: |
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Relative proportion positive GP responses to attitude statements for GPs who accept CFS/ME as recognisable clinical entity and those who don't or are uncertain. Estimates with confidence intervals greater than 1 have a significantly higher proportion of positive responses in GPs who accept CFS/ME as recognisable clinical entity compared to those who don't or are uncertain.
| Appendix 4: |
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Relative proportion of positive GP responses to attitude statements for GPs who know anyone socially with CFS and those who don't. Estimates with confidence intervals greater than 1 have a significantly higher proportion of positive responses for GPs who know anyone socially with CFS compared to those who don't.
| Appendix 5: |
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Relative proportion positive for GP responses to attitude statements for female and male GPs. Estimates with confidence intervals greater than 1 had a significantly higher proportion of positive responses for female GPs.
| Acknowledgments |
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Lisa Saffron Research Associate, Unit of Applied Epidemiology, University of The West of England, Bristol. With thanks to the GPs served by the Bristol, Gloucester and Taunton NHS microbiology laboratories who participated in the study. Gillian Swainson, MSc student, University of The West of England, Bristol.
| References |
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1 Department of Health. CFS/ME Working Group: Report to the Chief Medical Officer of an independent working group. 2002. Available from: http://www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidance/PublicationsPolicyAndGuidanceArticle/fs/en?CONTENT_ID=4064840&chk=D8nces
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