Category: Medical Care

Using multiple sources of knowledge to reach clinical understanding of chronic fatigue syndrome

Abstract:

PURPOSE: Chronic fatigue syndrome (CFS), or myalgic encephalitis (ME), is a contentious condition and often a diagnosis of exclusion. Current policy in the United Kingdom recommends management in primary care. We explored how patients with CFS/ME and family physicians understand this condition and how their understanding might affect the primary care consultation.

METHODS: We undertook a qualitative study with patients and family physicians from North West England participating in a primary care-based randomized controlled trial (FINE Trial). Data were collected through purposive sampling and in-depth semistructured interviews with 24 patients and 14 family physicians. We analyzed interview transcripts using constant comparison methods.

RESULTS: Family physicians access social and cultural knowledge to reach a clinical understanding of CFS/ME and its management. Patients recognize the difficulties family physicians encounter in understanding their symptoms and access similar nonclinical sources of information. We suggest that both patients and physicians use biomedical discourse within the consultation: the physician to maintain the position as an expert, the patient to engage the physician.

CONCLUSIONS: Family physicians obtain information about CFS/ME from their nonprofessional world, which they incorporate into their professional realm. Patients and physicians describe the use of the discourse of science within consultations about CFS/ME. This form of shared understanding could lead to a positive collaborative interaction. Family physicians need a biomedical, evidence-based knowledge about CFS/ME. There is potential to use the rich knowledge base that patients can bring to consultations in training initiatives directed at family physicians.

 

Source: Chew-Graham CA, Cahill G, Dowrick C, Wearden A, Peters S. Using multiple sources of knowledge to reach clinical understanding of chronic fatigue syndrome. Ann Fam Med. 2008 Jul-Aug;6(4):340-8. doi: 10.1370/afm.867. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2478494/ (Full article)

 

Chronic fatigue syndrome: implications for women and their health care providers during the childbearing years

Abstract:

Chronic fatigue syndrome is a complex debilitating medical disorder that affects approximately 4 million persons in the United States, predominantly women. There has been little scientific exploration about the experience of pregnancy, childbirth, and the postpartum period for women with this disorder. A review of the literature and current research findings addressing the epidemiology, diagnosis, symptoms, and treatment of chronic fatigue syndrome are presented, as well as the currently available data regarding the experience of women with chronic fatigue syndrome anticipating or experiencing pregnancy and the postpartum period. Expert opinion is presented along with current evidence to provide guidelines for the care of women with chronic fatigue syndrome during pregnancy, labor and birth, lactation, and the postpartum period.

 

Source: Allen PR. Chronic fatigue syndrome: implications for women and their health care providers during the childbearing years. J Midwifery Womens Health. 2008 Jul-Aug;53(4):289-301; quiz 399. doi: 10.1016/j.jmwh.2007.12.001. https://www.ncbi.nlm.nih.gov/pubmed/18586181

 

Determinants of health care use in chronic fatigue syndrome patients: a cross-sectional study

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) is associated with a high use of health care services. To reduce the related costs for patients and society, it will be useful to know which factors determine CFS patients’ amount of health care use. Little is known, however, about these factors.

METHOD: The present study retrospectively performed a cross-sectional analysis to investigate the possible factors determining CFS patients’ health care use. A total of 263 CFS patients, derived from two subgroups (149 from tertiary care and 114 from primary/secondary care), participated. Health care use was measured with a questionnaire asking details on consumption over the past 6 months. Fatigue severity and physical functioning were measured with the subscale Experienced Fatigue of the Checklist Individual Strength (CIS-20) and the subscale Physical Functioning of the SF-36, respectively. Multiple regression analysis, T-tests, and chi(2) tests were performed.

RESULTS: The regression analysis revealed that, after controlling for patient characteristics (explaining 13%), fatigue factors added 4% predictive value and certain perpetuating factors of fatigue, including focus on bodily symptoms and attributions of fatigue, added another 5%. The analysis of subgroups revealed that, compared to the tertiary care population, fewer patients from primary/secondary care had visited a medical specialist (50% vs. 71%), used antidepressants (16% vs. 25%) and tranquilizers (3% vs. 18%), and had spent a night in hospital (7% vs. 10%). However, overall costs of health care between these subgroups did not differ.

CONCLUSIONS: This study showed that illness duration, physical impairment due to fatigue, and psychological perpetuating factors of fatigue do determine the variance in CFS patients’ health care use. These results give clear directions for treating CFS patients and managing health care for CFS.

 

Source: Scheeres K, Wensing M, Severens H, Adang E, Bleijenberg G. Determinants of health care use in chronic fatigue syndrome patients: a cross-sectional study. J Psychosom Res. 2008 Jul;65(1):39-46. doi: 10.1016/j.jpsychores.2008.03.015. Epub 2008 May 22. https://www.ncbi.nlm.nih.gov/pubmed/18582610

 

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

 

NICE behaviour: ME guideline is unworkable

Comment on: Diagnosis and management of chronic fatigue syndrome or myalgic encephalomyelitis (or encephalopathy): summary of NICE guidance. [BMJ. 2007]

 

The National Institute for Health and Clinical Excellence (NICE) recommends that everyone with mild or moderate myalgic encephalopathy/chronic fatigue syndrome (ME/CFS) should be offered a course of either cognitive behaviour therapy (CBT) or graded exercise therapy (GET).1

This is despite published evidence remaining weak (especially for group CBT) and inconsistent 2. Patient evidence submitted to the chief medical officer’s report concluded that CBT produced “no change” in 67% of cases and made the condition “worse” in 26% of cases.3 Around 50% of respondents reported that inappropriate exercise therapy had also made their condition “worse.”3

When the NICE estimate on prevalence is used this controversial recommendation will affect some 200 000 people. A one to one course of CBT covering 12 to 16 sessions will cost well over £1500. The cost of a professionally supervised exercise therapy programme is also likely to be substantial.

So where is around £300 million of new money going to come from at a time when very limited funding for some of the newly established NHS clinical services for people with ME/CFS is now being cut?4 And where are all the therapists going to come from? Those already in post often cannot even cope with their current workload.

These are important questions that I raised at a NICE implementation and planning meeting in October 2006—but nobody from NICE could provide a convincing answer. These recommendations are going to be of no value whatsoever to many people with ME/CFS. They are also going to be impossible to implement owing to a lack of both funding and human resources.

You can read the rest of this comment here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1976494/

 

Source: Shepherd CB. NICE behaviour: ME guideline is unworkable. BMJ. 2007 Sep 15;335(7619):528. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1976494/ (Full article)

 

Diagnosis and management of chronic fatigue syndrome or myalgic encephalomyelitis (or encephalopathy): summary of NICE guidance

Data from other countries indicate that chronic fatigue syndrome (also known as myalgic encephalomyelitis or myalgic encephalopathy) (CFS/ME) is relatively common (affecting at least 0.2-0.4% of the population), although good epidemiological data for the United Kingdom are lacking. Many different potential aetiologies for CFS/ME have been investigated, including neurological, endocrine, immunological, genetic, psychiatric, and infectious, but the aetiology cannot yet be fully explained. CFS/ME can cause prolonged illness and disability and substantially affect patients and their families. Although most patients have mild or moderate symptoms, some have severe CFS/ME and are housebound or even unable to move from their bed. Uncertainties about diagnosis and management may exacerbate the impact of symptoms, and patients often encounter delays in diagnosis and difficulty accessing information, support, and potentially helpful therapies.1 This article summarises the most recent guidance from the National Institute for Health and Clinical Excellence (NICE) on diagnosing and managing this condition.2

 

Source: Baker R, Shaw EJ. Diagnosis and management of chronic fatigue syndrome or myalgic encephalomyelitis (or encephalopathy): summary of NICE guidance. BMJ. 2007 Sep 1;335(7617):446-8. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1962830/ (Full article)

 

Chronic fatigue syndrome or myalgic encephalomyelitis

Comment on: Diagnosis and management of chronic fatigue syndrome or myalgic encephalomyelitis (or encephalopathy): summary of NICE guidance. [BMJ. 2007]

The uncertainty inherent in making a diagnosis of chronic fatigue syndrome (CFS) is reflected by the variety of names (such as myalgic encephalomyelitis; ME) it has been given. The names reflect the hope that such labels can impose some certainty where little exists. Many doctors are reluctant to make a diagnosis of CFS, with half not even believing it exists.1 The consequences of this uncertainty and reluctance have been that patients hear mixed messages and often receive poor, if any, care.2 It is therefore a welcome relief that the National Institute for Health and Clinical Excellence (NICE) has just published clinical guidelines on the diagnosis and management of this disease.3 In this week’s BMJ, Baker and Shaw summarise the guidelines.4

You can read the rest of this comment here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1962896/

 

Source: White P, Murphy M, Moss J, Armstrong G, Spencer P. Chronic fatigue syndrome or myalgic encephalomyelitis. BMJ. 2007 Sep 1;335(7617):411-2. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1962896/ (Full article)

 

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

 

With the back to the future

Health care is confronted regularly with patients we understand little of and where our advice is inadequate. Chronic fatigue syndrome is one such condition. It is now more important to think than to summarize the discouraging research findings that have emerged so far.

You can read the rest of this comment here:  http://tidsskriftet.no/2006/10/kommentar/med-ryggen-mot-fremtiden

 

Source: Bruusgaard D. With the back to the future. Tidsskr Nor Laegeforen. 2006 Oct 19;126(20):2686. [Article in Norwegian] http://tidsskriftet.no/2006/10/kommentar/med-ryggen-mot-fremtiden (Full article)

 

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)