048 ‘No one wants to look after the fibro patient’: designing effective healthcare services for patients with fibromyalgia: two systematic reviews

Abstract

Background: Patients with fibromyalgia describe feeling frustrated with the healthcare system. Service provision is patchy at best but often non-existent. It is unclear how to effectively organise and deliver healthcare across care settings. In order to inform the development of an optimal model of care for fibromyalgia, we undertook two systematic reviews to examine existing evidence on a) models of care for fibromyalgia and b) patients' experiences with the healthcare system. Methods: MEDLINE(R) Ovid, EMBASE, AMED, CINAHL, PsycINFO, Web of Science, and Cochrane CENTRAL were searched in January 2018. Reference and citation lists of included studies were also checked. We defined a model of care as evidence-informed framework which guides how best to organise patients' journeys through the entire healthcare system. The focus of the second review was on patient experiences regarding these healthcare journeys. Articles were screened by one reviewer and where there was uncertainty, two further reviewers adjudicated. Due to the heterogeneity of study designs, narrative syntheses were undertaken for quantitative data. Thematic analysis was applied for qualitative data. Results: Model of care: 1,535 titles were identified from which six studies were evaluated as eligible. They were conducted across five countries. There was one randomised controlled trial, three crosssectional studies, one retrospective service evaluation and review of medical records. Patient care experiences: 8,268 titles were identified from which 19 studies were evaluated as eligible. This included quantitative, qualitative and mixed methods studies from thirteen countries. Study populations were drawn from a range of care settings. No evidence-based model of care covering the whole patient journey through the healthcare system was identified. Studies either focused on single healthcare services offered at specific stages of the healthcare journey (mostly diagnosis) or compared outcomes between different care settings. Limited evidence suggests that the diagnostic accuracy of specialist nurses was equivalent to rheumatologists. Rheumatology services can be helpful where there is diagnostic uncertainty but there was no clear advantage for ongoing care in a secondary care setting. Patients reported diagnostic delays, multiple visits to a range of healthcare providers and a lack of purposeful coordination of care. Difficult interactions with healthcare staff, in particular not feeling believed or listened to, were of major concern to patients. They emphasised the importance of mutual trust in their relationships with healthcare professionals. Conclusion: Evidence on how best to organise care for patients with fibromyalgia is limited and overall patient experiences of care are poor. These findings provide a strong rationale for conducting the first major programme of work to develop a new model of care for fibromyalgia.