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

Abstract

Fibromyalgia is a common and complex long-term pain condition. Despite advancements in our understanding and treatment of fibromyalgia, patients report patchy health care provision and frustrating journeys through the health care system. To inform how best to deliver care, we undertook 2 narrative reviews examining existing evidence on (1) models of care for fibromyalgia and (2) patients' experiences, preferences, and unmet needs regarding their health care. 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 health care system was identified. Limited evidence suggests no clear benefit for ongoing care in secondary care settings. Patients with fibromyalgia report difficult interactions with the health care 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 health care 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 health care 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.

“Can Someone as Young as You Really Feel That Much Pain?” – A Survey on How People With Fibromyalgia Experience Healthcare in Sweden

“…PREMs are becoming increasingly incorporated in the Swedish National Quality Registers ( Nilsson et al., 2016 ). A review has summarized which care preferences patients with fibromyalgia have and they included patient-centered communication styles such as shared decision-making about care, reciprocal information sharing and increased mutual understanding ( Doebl et al., 2020 ). Furthermore, the study presented ideas from patients on how health care personnel could improve their care such as; allow patients experiences and expertise to be heard, acknowledge fibromyalgia as a condition in need of healthcare, increase knowledge about fibromyalgia and giving appropriate support ( Doebl et al., 2020 ).…”

“…A review has summarized which care preferences patients with fibromyalgia have and they included patient-centered communication styles such as shared decision-making about care, reciprocal information sharing and increased mutual understanding ( Doebl et al., 2020 ). Furthermore, the study presented ideas from patients on how health care personnel could improve their care such as; allow patients experiences and expertise to be heard, acknowledge fibromyalgia as a condition in need of healthcare, increase knowledge about fibromyalgia and giving appropriate support ( Doebl et al., 2020 ). A Swedish study has found that people with fibromyalgia find support in fibromyalgia associations, where they could get confirmation, understanding and information from each other that the health care personnel could not satisfy ( Juuso et al., 2014 ).…”

A feasibility Randomised Controlled Trial of a Fibromyalgia Self-management Programme in a community setting with a nested qualitative study (FALCON)

“…A recent review reported no clear evidence of the bene t of treating FM in secondary care. The authors recommend developing a new model of care for FM, and highlight the potential bene ts of providing care in a primary care setting 21 . Transferring the FSMP to a community setting presents opportunities to offer specialised care closer to home and determine the clinical and cost-effectiveness.…”

Self-management for chronic widespread pain including fibromyalgia: A systematic review and meta-analysis

“…As support for self-management is increasingly called for by both patients and clinicians [6,20], understanding the broad effectiveness literature in this domain is critical to support the implementation and development of effective self-management interventions for CWP. For the current review, we drew on a definition of self-management that aligned conceptually with key aspects of a self-management approach [10][11][12][13]; combining multiple components and the teaching of skills that could be applied beyond the intervention: Miles et al [21] define selfmanagement interventions as multicomponent programmes which aim to improve health or quality of life, with opportunities for improvements in individuals' abilities to manage their own health.…”