Towards better healthcare delivery for fibromyalgia: people’s experiences in primary care

Problem

Fibromyalgia is common. Whilst knowledge about fibromyalgia has increased over time, diagnosis and management are complex. People with fibromyalgia report frustrating and difficult journeys through the healthcare system, including primary care. However, we do not know how best to organise and provide the most person-centred care. Hence, this research project is exploring people’s experiences and healthcare journeys.

Approach

The project had two parts. First, a cross-sectional postal survey was conducted with an existing Scottish cohort of people with a reported formal fibromyalgia diagnosis or suggestive symptoms. The questionnaire collected information including diagnostic characteristics, healthcare usage and care experiences in primary care. Statistical analysis of these data was performed in STATA15. Second, semi-structured qualitative interviews were conducted with people reporting fibromyalgia from across the United Kingdom. They were recruited in various ways including from the original cohort and via social media. Interviews explored healthcare experiences, impacts of fibromyalgia and coping strategies. Interviews were analysed in NVivo 12, using reflexive thematic analysis. The recorded interviews, which were conducted in person, online or by phone, will now be used as a resource on the award-winning website https://healthtalk.org. Patient partners were involved throughout the research.

Findings

421 people returned postal questionnaires. 85 people (86% female) reported a formal fibromyalgia diagnosis. Median lengths to receive a diagnosis after first consulting a healthcare professional for their symptoms was three years (IQR 0, 10). 34% were diagnosed by their GP. Whilst 61% consulted their GP practice in the past three months, only 43% reported receiving ongoing care from their GP. Healthcare needs important to them were often not well met such as receiving appropriate information and self-management support. The semi-structured interviews included 31 participants (27 female) aged 23 to 77 years. The minority was diagnosed in primary care. People commonly reported lacking crucial information about fibromyalgia, formal needs assessments, self-management planning and emotional support in primary care, which they felt impacted their quality of life. People who reported trusting their GP felt better supported than those who did not. Whilst participants appreciated the NHS, many were concerned that it was under resourced and that GPs are overburdened. Access to regular primary care nursing support such as that offered for asthma or diabetes was identified as one key solution for improving healthcare delivery for fibromyalgia.

Consequences

The findings suggest that current fibromyalgia management guidelines are not implemented well by GPs. Research into the role of the wider primary care team and how they can coordinate optimal fibromyalgia care is needed. This is especially important considering likely challenges to be faced by general practices during and after the current pandemic. It is envisaged that the Healthtalk website may provide a useful resource for supporting people with fibromyalgia to achieve a meaningful life.