Patients’ perceptions of medical care in chronic fatigue syndrome

This study investigated perceptions of medical care among patients with chronic fatigue syndrome (CFS) referred to a specialist clinic. Sixty-eight patients completed a questionnaire survey on their overall satisfaction with medical care received since the onset of their illness, and their views on specific aspects of care. Two-thirds of patients were dissatisfied with the quality of medical care received. Dissatisfied patients were significantly more likely to describe delay, dispute or confusion over diagnosis; to have received and rejected a psychiatric diagnosis; to perceive doctors as dismissive, skeptical or not knowledgeable about CFS and to feel that the advice given was inadequate or conflicting. Satisfied patients were significantly more likely to perceive doctors as caring, supportive and interested in their illness; to state that they did not expect their doctors to cure CFS and to perceive their GP or hospital doctor as the source of greatest help during their illness. Many patients were critical of the paucity of treatment, but this was not associated with overall satisfaction. The findings suggest that medical care was evaluated less on the ability of doctors to treat CFS, and more on their interpersonal and informational skills. Dissatisfaction with these factors is likely to impede the development of a therapeutic doctor–patient alliance, which is central to the effective management of CFS. The findings suggest a need for better communication and better education of doctors in the diagnosis and management of CFS.