No one wants to look after the fibro patient - Understanding models, and patient perspectives, of care for fibromyalgia: reviews of current evidence

Fibromyalgia is a common and complex long-term pain condition. Despite advancements in our understanding and treatment of fibromyalgia, patients report patchy healthcare provision and frustrating journeys through the healthcare system. To inform how best to deliver care, we undertook two narrative reviews examining existing evidence on a) models of care for fibromyalgia and b) patients’ experiences, preferences and unmet needs regarding their healthcare. Seven databases were systematically searched. Quantitative data was narratively synthesised and qualitative data thematically analysed. No evidence-based model of care covering the patient journey through the entire healthcare system was identified. Limited evidence suggests no clear benefit for ongoing care in secondary care settings. Patients with fibromyalgia report difficult interactions with the healthcare system that might equally be expressed by those with other longterm conditions, such as inconsistent and poorly coordinated care. However, they also face unique problems; fibromyalgia was often not viewed as a real condition, resulting in difficult encounters with healthcare staff, in particular not feeling believed or listened to. Significant delays in diagnosis were commonplace. Positive care experiences such as being listened to and shared-decision making made patients feeling better informed, well supported and more satisfied. There is little evidence to inform how best to organise healthcare for patients with fibromyalgia and ensure care is delivered in a coordinated and consistent way. These findings provide a strong rationale for developing a new model of care for fibromyalgia.