A mixed-methods evaluation study of an online education intervention for people with a new diagnosis of fibromyalgia at a South East England hospital trust

Abstract

PURPOSE
Patient education is recommended to manage fibromyalgia, a long-term predominantly widespread pain condition. It is not clear how effective online education is on providing patients with the skills and knowledge to self-manage. The study aimed to explore the experiences of newly diagnosed patients receiving an online education intervention, delivered at a South East England Hospital Trust, to evaluate how the intervention may contribute to their selfmanagement of the condition.

METHODS
Following a literature review a mixed methods study design was used to explore patients’ views of their journey to diagnosis and the experiences with the online education intervention. During the study period (February-December 2023), 100 patients newly diagnosed with fibromyalgia received the education intervention and completed a Patient Activation Measure (PAM). Four online focus groups were conducted and audio data transcribed and analysed with thematic analysis. PAMs were completed at baseline (T1), 24 completed at 2 months post-education (T2)
and 4 completed at 6 months (T3) and compared with patients receiving the education intervention as part of routine care.

RESULTS
Qualitative analysis of the focus groups using thematic analysis identified 4 main themes and 3 sub-themes linear with the patient journey to diagnosis: 1) Searching for a reason for their symptoms, 2) Need for compassion and understanding, 3) Contradictory and suspicious thoughts regarding the diagnosis 4) Conceptions of the treatment. Patients described the frustration of the prolonged diagnostic process. The rheumatology consultation and receiving a diagnosis was a
significant point in their journey and highlighted the challenge of illness and identity. Insight was gained into the education intervention offered, revealing it was viewed positively. Quantitative analysis of PAM scores indicated that the study participant data aligned with routine care. Most study participants (75%) scored L1 or L2 at baseline (T1) showing a low level of skills and confidence to self-manage at diagnosis. Following completion of the education intervention 50% scored L1 or L2, showing a possible trend towards increased skills and
confidence, but not statistically significant p
CONCLUSIONS
Insights gained into the patients’ views and feelings experienced of their journey to diagnosis, and views on online patient education indicate it was a valued intervention, and should be offered at the diagnosis stage. Self-management skills and confidence were low prior to the education intervention, with positive trends of improvement post-education in the study participants. The themes identified warrant greater exploration through further research to shape future long-term
self-management of fibromyalgia.

Date of Award	2025
Original language	English