Understanding health services delivery for fibromyalgia
Research type
Research Study
Full title
A realist-informed investigation of the organisation and delivery of health and social care services for people with Fibromyalgia living in the UK.
IRAS ID
275725
Contact name
Gary Macfarlane
Contact email
Sponsor organisation
University of Aberdeen
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Fibromyalgia is a multi-symptom long-term condition that affects approximately 2% of the general population. It is associated with reduced quality of life and work ability and poses a significant socioeconomic burden. Diagnosis of fibromyalgia can be challenging, and some people wait a long time for access to treatments and support to help them manage their symptoms. Even after prompt diagnosis, variability in provision of healthcare services for people with fibromyalgia living in the UK results in unmet need, and both patients and healthcare professionals report frustration and dissatisfaction.
Our study aims to explore how health and social care services are currently organised and delivered to people with fibromyalgia living in the UK. We want to find out what works, the conditions under which it works, and how it works to bring about good outcomes that matter to people with fibromyalgia.
To do this, we will undertake ten case studies across the UK. We will observe (online or in-person) the working practices of staff involved in organising and delivering health and social care to people with fibromyalgia in NHS and non-NHS services. We will gather documents relating to service organisation and delivery (for example, care pathways) and talk to staff (using interviews) about the services they provide and factors influencing outcomes for people with fibromyalgia. These data will help us to develop explanations about what works, and how it works, to bring about good outcomes that matter to people with fibromyalgia. We will share, confirm, and refine these explanations with staff using online focus groups.
The findings from this study will help develop a theory (or theories) about how health and social care works for people with fibromyalgia living in the UK, from which new models of organising and delivering health and social care can be advanced.REC name
HSC REC A
REC reference
20/NI/0157
Date of REC Opinion
18 Nov 2020
REC opinion
Further Information Favourable Opinion