Tag: medical attitudes

Chronic fatigue syndrome: labels, meanings and consequences

Abstract:

In this month’s issue, we report a survey of members of the Association of British Neurologists, which asked if they viewed chronic fatigue syndrome (CFS) as a neurological condition–84% of respondents did not. This is at odds with current classification in ICD-10. We discuss the difficulties of classifying CFS and myalgic encephalopmeylitis (ME), including historical and sociological factors, the pitfalls of the physical/psychological dichotomy and why classification matters to doctors and patients.

 

Source: Wojcik W, Armstrong D, Kanaan R. Chronic fatigue syndrome: labels, meanings and consequences. J Psychosom Res. 2011 Jun;70(6):500-4. doi: 10.1016/j.jpsychores.2011.02.002. Epub 2011 Apr 9. https://www.ncbi.nlm.nih.gov/pubmed/21624573

 

U.S. healthcare providers’ knowledge, attitudes, beliefs, and perceptions concerning Chronic Fatigue Syndrome

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) is a debilitating illness with particular difficulties for healthcare providers because there are no diagnostic signs or laboratory tests and because management aims to merely improve symptoms. Further complicating management, healthcare providers’ awareness concerning CFS has not been rigorously assessed. The present study aimed to ascertain United States (U.S.) healthcare providers’ awareness of CFS and to assess their knowledge, attitudes, and beliefs (KAB) related to diagnosis and management of the illness. This information forms the foundation for developing CFS educational strategies.

METHODS: We combined convenience and probability samples to measure CFS KAB among healthcare providers. In the convenience sample, 1,255 healthcare providers (81% response rate) from 13 professional conferences completed a 12-item form. Descriptive statistics were reported for 9 KAB item responses and chi-square tests were performed for examining their association with giving a diagnosis of CFS. We used principal component analysis to construct multidimensional subscales and perform a general linear model to examine factors associated with subscales. The probability sample involved data on 15 CFS-specific questions from 2006 and 2007 DocStyles web-based panel surveys collected from 2,750 physicians (average response rate 55%). We calculated descriptive and chi-square statistics. The significance was set at two-tailed with the alpha level of 0.05.

RESULTS: Healthcare providers in both samples were aware of CFS and exhibited a high level of knowledge. Overall, 96% of respondents in the DocStyles (probability) sample had heard about CFS. Healthcare providers in the conference (convenience) sample demonstrated good KAB scores; physicians’ scores were highest on KAB scales and lowest in perception. Nurses’ scores were lowest in knowledge. More than 40% of physicians reported ever giving a CFS diagnosis and in the DocStyles (probability) sample more than 80% of physicians correctly identified CFS symptoms. Physicians reported professional journals, the Internet, and continuing education programs as the top 3 sources from which they obtain CFS information.

CONCLUSIONS: Findings from these combined samples fill a gap in the evidence-base of U.S. healthcare providers’ and knowledge, attitudes, and beliefs concerning CFS. Importantly, respondents in both samples expressed similar knowledge, attitudes, beliefs and perceptions. Awareness was high and negative attitudes were low. The primary areas for future education should address diagnosis and management of CFS and should be delivered through those venues providers indicated they primarily use. Data from this study provide a benchmark for evaluation the success of these future efforts.

 

Source: Brimmer DJ, Fridinger F, Lin JM, Reeves WC. U.S. healthcare providers’ knowledge, attitudes, beliefs, and perceptions concerning Chronic Fatigue Syndrome. BMC Fam Pract. 2010 Apr 21;11:28. doi: 10.1186/1471-2296-11-28. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2875206/ (Full article)

 

The doctor-patient relationship in chronic fatigue syndrome: survey of patient perspectives

Abstract:

BACKGROUND: When confronted with chronic fatigue syndrome (CFS), general practitioners (GPs) need to deal with diverse complaints. This may introduce a sense of powerlessness and frustration in the GP, which could possibly undermine the doctor-patient relationship.

AIM: Our aim was to list the perspectives of patients with CFS regarding the medical encounter.

METHOD: This was a questionnaire study of systematically selected patients presenting to a tertiary clinic specialising in CFS. A questionnaire was presented to every third patient attending the clinic. Statistical computations were performed using the SPSS statistical package.

RESULTS: One hundred and seventy-seven patients completed the questionnaire. A diagnosis of CFS was made by a GP in 8% of the cases. In 31% of the cases the GP had experience with general CFS complaints, and 35% of the GPs showed experience in CFS. Only 23% reported sufficient knowledge to treat the condition. According to the patients surveyed, 35% felt that their GP had experience in dealing with CFS.

CONCLUSIONS: The heterogeneity of CFS and the controversy surrounding this condition seemed to overwhelm GPs and strain the medical encounter. Patients with CFS seemed unsatisfied with the interaction with their doctor. Moreover, the results show that CFS is not addressed well by the medical community, and the failure to diagnose leads to a lack of empathetic care, with consequential loss of the capacity of the doctor to act as a healer.

 

Source: Van Hoof E. The doctor-patient relationship in chronic fatigue syndrome: survey of patient perspectives. Qual Prim Care. 2009;17(4):263-70. https://www.ncbi.nlm.nih.gov/pubmed/19807959

 

Functional somatic syndromes from the view of cultural anthropology

Abstract:

The functional somatic syndromes have acquired major socio-cultural and political dimensions. Socio-cultural factors clearly affect symptoms, suffering, and disability perception and reporting. And knowledge of explanatory models of bodily distress for patients from different cultural backgrounds is useful in the establishment of a stable doctor -patient relationship. FSS may be an operational category to bridge between medical explanatory model and patient’s model. According to medical anthropology, sickness has two faces; illness and disease. “Disease” is the problem from the practitioner’s perspective, and “illness” is the human experience of symptoms and suffering. In this paper, the anthropological research on chronic fatigue syndrome as “not real” illness experience was described.

 

Source: Nakagami A, Tsujiuchi T. Functional somatic syndromes from the view of cultural anthropology. Nihon Rinsho. 2009 Sep;67(9):1683-8. [Article in Japanese] https://www.ncbi.nlm.nih.gov/pubmed/19768901

 

Practice Nurses’ views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study

Abstract:

BACKGROUND: NICE guidelines suggest that patients with Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) should be managed in Primary Care. Practice Nurses are increasingly being involved in the management of long-term conditions, so are likely to also have a growing role in managing CFS/ME. However their attitudes to, and experiences of patients with CFS/ME and its management must be explored to understand what barriers may exist in developing their role for this group of patients. The aim of this study was to explore Practice Nurses’ understanding and beliefs about CFS/ME and its management.

METHODS: Semi-structured interviews with 29 Practice Nurses. Interviews were transcribed verbatim and an iterative approach used to develop themes from the dataset.

RESULTS: Practice nurses had limited understanding about CFS/ME which had been largely gained through contact with patients, friends, personal experiences and the media rather than formal training. They had difficulty seeing CFS/ME as a long term condition. They did identify a potential role they could have in management of CFS/ME but devalued their own skills in psychological intervention, and suggested counselling would be an appropriate therapeutic option. They recognised a need for further training and on going supervision from both medical and psychological colleagues. Some viewed the condition as contentious and held pejorative views about CFS/ME. Such scepticism and negative attitudes will be a significant barrier to the management of patients with CFS/ME in primary care.

CONCLUSION: The current role of Practice Nurses in the ongoing management of patients with CFS/ME is limited. Practice Nurses have little understanding of the evidence-base for treatment of CFS/ME, particularly psychological therapies, describing management options in terms of advice giving, self-help or counselling. Practice Nurses largely welcomed the potential development of their role in this area, but identified barriers and training needs which must be addressed to enable them to feel confident managing of patients with this condition. Training must begin by addressing negative attitudes to patients with CFS/ME.

 

Source: Chew-Graham C, Dixon R, Shaw JW, Smyth N, Lovell K, Peters S. Practice Nurses’ views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study. BMC Nurs. 2009 Jan 22;8:2. doi: 10.1186/1472-6955-8-2. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2635361/ (Full article)

 

Teaching medical students about medically unexplained illnesses: a preliminary study

Abstract:

BACKGROUND: This study examined how an interactive seminar focusing on two medically unexplained illnesses, chronic fatigue syndrome (CFS) and fibromyalgia, influenced medical student attitudes toward CFS, a more strongly stigmatized illness.

METHODS: Forty-five fourth year medical students attended a 90 minute interactive seminar on the management of medically unexplained illnesses that was exemplified with CFS and fibromyalgia. A modified version of the CFS attitudes test was administered immediately before and after the seminar.

RESULTS: Pre-seminar assessment revealed neutral to slightly favorable toward CFS. At the end of the seminar, significantly more favorable attitudes were found toward CFS in general (t (42) = 2.77; P < 0.01) and for specific items that focused on (1) supporting more CFS research funding (t (42) = 4.32; P < 0.001; (2) employers providing flexible hours for people with CFS (t (42) = 3.52, P < 0.01); and (3) viewing CFS as not primarily a psychological disorder (t (42) = 2.87, P < 0.01). Thus, a relatively brief exposure to factual information on specific medically unexplained illnesses was associated with more favorable attitudes toward CFS in fourth year medical students.

CONCLUSION: This type of instruction may lead to potentially more receptive professional attitudes toward providing care to these underserved patients.

 

Source: Friedberg F, Sohl SJ, Halperin PJ. Teaching medical students about medically unexplained illnesses: a preliminary study. Med Teach. 2008;30(6):618-21. doi: 10.1080/01421590801946970. https://www.ncbi.nlm.nih.gov/pubmed/18608944

 

Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)–a case study

Abstract:

OBJECTIVE: To explore obstructions for quality care from experiences by patients suffering from chronic fatigue syndrome (CFS).

METHODS: Qualitative case study with data drawn from a group meeting, written answers to a questionnaire and a follow-up meeting. Purposeful sample of 10 women and 2 men of various ages, recruited from a local patient organization, assumed to have a special awareness for quality care.

RESULTS: CFS patients said that lack of acknowledgement could be even worse than the symptoms. They wanted their doctors to ask questions, listen to them and take them seriously, instead of behaving degrading. Many participants felt that the doctors psychologized too much, or trivialized the symptoms. Participants described how doctors’ lack of knowledge about the condition would lead to long-term uncertainty or maltreatment. Even with doctors who were supportive, it would usually take months and sometimes years until a medical conclusion would be reached, or other disorders were ruled out. Increased physical activity had been recommend, but most of the informants experienced that this made them worse.

CONCLUSION: Current medical scepticism and ignorance regarding CFS shapes the context of medical care and the illness experiences of CFS patients, who may feel they neither get a proper assessment nor management.

PRACTICE IMPLICATIONS: CFS patients’ reports about patronizing attitudes and ignorance among doctors call for development of evidence based strategies and empowerment of patients, acknowledging the patients’ understanding of symptoms and the complex nature of the disease. The NICE guidelines emphasize the need of patient participation and shared decision-making.

Comment in: Qualitative methods in communication and patient education research. [Patient Educ Couns. 2008]

 

Source: Gilje AM, Söderlund A, Malterud K. Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)–a case study. Patient Educ Couns. 2008 Oct;73(1):36-41. doi: 10.1016/j.pec.2008.04.001. Epub 2008 May 16. https://www.ncbi.nlm.nih.gov/pubmed/18486415

 

Identity and coping experiences in Chronic Fatigue Syndrome: a synthesis of qualitative studies

Abstract:

OBJECTIVE: To provide insight into patients’ and doctors’ experiences with CFS.

METHODS: We compiled available qualitative studies and applied meta-ethnography to identify and translate across the studies. Analysis provided second-order interpretation of the original findings and developed third-order constructs from a line of arguments.

RESULTS: Twenty qualitative studies on CFS experiences were identified. Symptom experiences and the responses from significant others could jeopardise the patients’ senses of identity. They felt severely ill, yet blamed and dismissed. Patients’ beliefs and causal attributions oppose the doctor’s understanding of the condition. For the patient, getting a diagnosis and knowing more was necessary for recovery. Doctors were reluctant towards the diagnosis, and struggle to maintain professional authority. For patients, experience of discreditation could lead to withdrawal and behavioural disengagement.

CONCLUSION: The identities of CFS patients are challenged when the legitimacy of their illness is questioned. This significant burden adds to a loss of previously established identity and makes the patient more vulnerable than just suffering from the symptoms. CFS patients work hard to cope with their condition by knowing more, keeping a distance to protect themselves and learning more about their limits.

PRACTICE IMPLICATIONS: Doctors can support patients’ coping by supporting the strong sides of the patients instead of casting doubt upon them.

 

Source: Larun L, Malterud K. Identity and coping experiences in Chronic Fatigue Syndrome: a synthesis of qualitative studies. Patient Educ Couns. 2007 Dec;69(1-3):20-8. Epub 2007 Aug 14. https://www.ncbi.nlm.nih.gov/pubmed/17698311

 

The ME Bandwagon and other labels: constructing the genuine case in talk about a controversial illness

Abstract:

This paper examines the discourse of morality surrounding ‘ME’ as a contested illness, looking at how GPs and ME group members differentiate between the category of ‘genuine ME sufferer’ and the ‘bandwagon’. ‘Jumping on the bandwagon’ is a metaphor commonly used to describe the activity of ‘following the crowd’ in order to gain an advantage. This discursive analysis shows how ‘bandwagon’ categories are constructed in contrast to the category of genuine sufferer.

People who jump on the bandwagon are accused of matching their symptoms to media stereotypes, adopting trendy illnesses (‘fads’), or using ‘tickets’ to avoid facing up to psychological illnesses. Both GPs and ME group members construct a differential moral ordering of physical and psychological illness categories, where the latter assumes a lesser status. The paper concludes that against a background of medical uncertainty and controversy, the ‘bandwagon’ and other derogatory labels function as contrast categories that work to establish the existence of ‘ME’ as a genuine illness.

 

Source: Horton-Salway M. The ME Bandwagon and other labels: constructing the genuine case in talk about a controversial illness. Br J Soc Psychol. 2007 Dec;46(Pt 4):895-914. https://www.ncbi.nlm.nih.gov/pubmed/17535450

 

GMC must consider case against paediatricians who suspected parents of fabricating child’s illness

A couple suspected of fabricating their daughter’s illness and threatened with having her taken into care have won a High Court ruling that the General Medical Council must reconsider their complaint against the two paediatricians who raised the concerns.

The girl, now 15 years old, was eventually diagnosed with chronic fatigue syndrome. The local council agreed to withdraw the care proceedings and was ordered to pay the family’s costs after an independent expert appointed by the court and the doctor treating the girl made the diagnosis.

Her father, named only as Mr F to protect his daughter’s identity, lodged a complaint with the GMC against the paediatricians, who were named in the High Court judgment as Dr A and Dr B.

Mr F’s complaint included an allegation that the doctors had changed their minds and accepted that chronic fatigue syndrome was the correct diagnosis but had not immediately informed the local authority or the court hearing the case.

The charges were drawn up and the case went to the GMC’s preliminary proceedings committee (PPC), but, in July 2004, that committee decided not to refer the case to the professional conduct committee and threw it out.

Mr F sought a judicial review, arguing that the allegations were sufficient, if proved, to support a finding of serious professional misconduct. The GMC was willing to send the case back to the PPC, but the two doctors intervened as interested parties to oppose the application.

Mr Justice Sullivan ruled that the committee had failed to deal with the allegations and should have made further inquiries. He said that the charges as formulated had raised a specific allegation that the doctors had engaged in deceitful conduct, which had to be dealt with in the committee’s reasoning, and sent the case back to the committee.

A spokesman for the GMC said, “We note the decision handed down by Mr Justice Sullivan. The case will be referred back to the PPC for consideration.”

You can read the rest of this article here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1459583/

Source: Dyer C. GMC must consider case against paediatricians who suspected parents of fabricating child’s illness. BMJ. 2006 May 13;332(7550):1110. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1459583/ (Full article)