Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS) - A case s

Source: Patient Education and Counseling May 15, 2008 http://www.sciencedirect.com/science/journal/07383991

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

Ann Marit Gilje(a), Atle Soderlund(a), Kirsti Malterud(b,*) a Department of Public Health and Primary Health Care, University of Bergen, Bergen, Norway b Research Unit for General Practice, Unifob Health, Kalfarveien 31, N-5018 Bergen, Norway

* Corresponding author. Tel.: +47 55 58 61 33; fax: +47 55 58 61 30. E-mail address: kirsti.malterud@isf.uib.no  (K. Malterud).

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 complexnature of the disease. The NICE guidelines emphasize the need of patient participation and shared decision-making.

Table

Table 1. CDC 1994 case definition of CFS [2]

Clinically evaluated, medically unexplained fatigue of at least 6 months duration that is

New onset (not life long)

Not result of ongoing exertion

Not substantially alleviated by rest

A substantial reduction in previous level of activities

The occurrence of four or more of the following symptoms

Subjective memory impairment

Sore throat

Tender lymph nodes

Muscle pain

Joint pain

Headache

Unrefreshing sleep

Postexertional malaise lasting more than 24 hours

Exclusion of all relevant differential diagnoses.

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