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 degradingly. 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.
Source: Patient Education and Counseling, May 15, 2008. [E-pub ahead of print] PMID: 18486415, Gilje AM, Soderlund A, Malterud K. Department of Public Health and Primary Health Care, University of Bergen, Bergen, Norway.