Development and evaluation of a transdiagnostic, tailored and internet-based guide for individuals with persistent somatic symptoms (GUIDE-PSS): A proof-of-concept study using a patient participatory research approach.

Abstract

At least one in five patients reports persistent somatic symptoms (PSS). These include terms such as fibromyalgia, irritable bowel syndrome and non-cardiac chest pain. Affected individuals often receive extensive bio-medical diagnostics and treatment for years without relief. They often feel stigmatised, helpless and left alone and often seek help outside the medical system. What is lacking is a care concept that guides those affected to needs-based and guideline-supported care at an early stage. In the field of early detection of de-pression, we were able to show that a patient-centred intervention leads to active patient participation and a reduction in depression. A central element for success was the direct involvement of patients in the research. Our assumption is that such a patient participatory approach could also forward health care research for individuals with PSS. Together with affected individuals, we want to develop a transdiagnostic, tailored and internet-based guide that leads patients to guideline-based care. A participatory research team consisting of affected individuals and researchers will conduct a series of workshops for the development. The contents of the PSS-GUIDE are based on educational material from national guidelines (e.g. fibromyalgia). Input from representatives of health insurance companies and self-help organisations will continue to contribute to the development. In a subsequent survey with patients, the final PSS-GUIDE will be compared with existing patient material in terms of acceptance, usefulness and accessibility and the potential to promote active patient participation in health care services