Patient-centred Care for Fibromyalgia: New pathway Design
Fibromyalgia (FM) is a centralised pain state with symptoms beginning in adolescence/early adulthood and manifests as widespread pain, fatigue and cognitive dysfunction. It has been the second most common reason for referral to a rheumatologist (after osteoarthritis) in Great Britain, diagnosis often taking many years.
PACFiND is a collaboration between Aberdeen University [Aberdeen] the Nuffield Department of Primary Care Health Sciences at the University of Oxford and other partners, to co-produce a new, evidence-based, costed plan for services for people with FM. Researchers are working with patient partners, healthcare professionals and decision makers to develop a new approach to care for people with FM based on people’s experience of FM, the care they have received, their preferences for care and the current organisation and delivery of care for people with FM. Our team is working on the organisation of care for people with FM in the UK.
Health and social care interventions for people with fibromyalgia vary geographically and in practice in both primary and secondary care across the UK. An in-depth exploration of how these interventions/programmes/services are delivered and experienced by people with FM living in Great Britain will provide examples of care pathways that improve health-related outcomes, patient satisfaction and service delivery. These examples will inform PACFiND’s design of a new approach to care for people with FM, providing benefit for them, their families and carers, healthcare professionals and policymakers concerned with the efficacy and cost-effective provision of health and social care.
What we are doing
After interviews with people with FM were completed [https://healthtalk.org/Fibromyalgia/overview ] we undertook a survey of over 2000 people with FM and service providers to understand current services for people with FM. https://youtu.be/VaVjzmPqJGM.
This informed our current focus on geographically diverse services providing good care for people with FM. We are undertaking non-participant observations of services, analysis of local and national service documents and interviews with healthcare professionals and service managers to understand what good care for people with FM comprises. These findings will be used in the final part of the PACFiND project to co-produce a new evidence-based approach to care for people with FM in the UK. This will incorporate outcomes that are known to be important to people with FM, namely
- Validation of patient experiences of signs and symptoms of fibromyalgia and prompt diagnosis.
- Interactions between people with fibromyalgia and health and/or social care providers that generate hope, are individualised and patient-centred, and focussed on ‘what matters to me’ through processes of shared decision making.
- Recognition of fibromyalgia as a disability (Barber et al. 2019).
- Sustained and supportive relationships with skilled and knowledgeable health and/or social care providers over time to help build self-management and facilitate re-integration into life and society.
- Prompt access to interventions/programmes of health and/or social care that are coordinated across providers.
- Increased knowledge, skills and confidence to manage independently.
The project will be completed in 2024.
It is funded by Versus Arthritis.