"Understand your illness and your needs": Assessment-informed patient education for people with multiple functional somatic syndromes.

Abstract

Patients suffering from multiple functional somatic syndromes (FSS) such as fibromyalgia, chronic fatigue syndrome, or irritable bowel syndrome, often lack both a clear diagnosis and tangible illness explanations, which is a barrier for treatment engagement. We tested a short-term intervention taking the unifying concept of Bodily Distress Syndrome (BDS) as a point of departure. The intervention consisted of a clinical assessment, group-based patient education, and one follow-up consultation. 174 patients were included and received questionnaires at baseline, after clinical assessment, after patient education, and median 19 weeks after baseline. Data were analyzed using random effects models and simple t-tests. Qualitative data were thematically analyzed. We found small reductions in symptom levels, considerable reductions in illness worry, and improvement of illness perceptions and illness-related behaviors. Overall, patients evaluated the intervention positively and expressed high expectations for further treatment. Qualitative results mainly supported these findings. Targeting illness perceptions through patient education is crucial to obtain patient engagement in self-help management or further treatment. This may lead to improved outcomes. Physicians in primary and secondary care should strive to give patients with multiple FSS a clear understanding that their various FSS diagnoses are related and provide tangible illness explanations.