PACFIND DCE 23April2021 Version1

• Research type

  Research Study

• Full title

  Developing new models of care for people with fibromyalgia: designing a Discrete Choice Experiment (DCE) to understand patients’ preferences for alternative models of care

• IRAS ID

  296539

• Contact name

  Paul McNamee

• Contact email

  p.mcnamee@abdn.ac.uk

• Sponsor organisation

  University of Aberdeen

• Duration of Study in the UK

  0 years, 2 months, 31 days

• Research summary

  Research Summary
  Fibromyalgia is a common condition causing widespread chronic pain, associated with profound fatigue and marked sleep disturbance. Whilst there is considerable evidence on effective treatments, diagnosis and management are complex. Most individuals with fibromyalgia are not receiving timely diagnosis, access to effective treatments or ongoing support with managing the condition. Patients feel dissatisfied with current services believing that no-one is willing to take responsibility for their care. We plan to conduct a pilot for a Discrete Choice Experience that will allow us to understand the strength of patient’s preferences for alternative models of care for Fibromyalgia. The findings will inform the development of a new, better model of care for fibromyalgia.

  Summary of Results
  We conducted a pilot study to explore how individuals with fibromyalgia feel about different ways of delivering care for their condition. Fibromyalgia is a long-term condition that causes widespread pain, fatigue, and sleep problems. People with fibromyalgia often find it challenging to get a diagnosis and access the care they need.

  In this study, we mailed a questionnaire to 75 people who had previously taken part in research about musculoskeletal health and had reported a fibromyalgia diagnosis. We asked them to compare different care options and choose which ones they preferred. For example, we included questions about how long it takes to get diagnosed, which healthcare professional provides care (such as a GP, nurse, or specialist), and the types of treatments offered (such as medication, exercise, or talking therapy).

  We received 41 completed questionnaires. The results showed that the questionnaire worked well and was clear for participants. This allowed us to identify preferences for care features and refine the survey for use in a larger, full-scale study.

  The pilot study did not lead directly to published results, but it helped us design a larger study, which led to the publication of findings about patient preferences for fibromyalgia care. Those results are available here:
  https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fclick.pstmrk.it%2F3ts%2Fdoi.org%252F10.1371%252Fjournal.pone.0305030.%2FNBTI%2FNwG7AQ%2FAQ%2F6987882b-5364-45ac-abde-97563d394341%2F1%2F23tOe2r0Kw&data=05%7C02%7Cgmcentral.rec%40hra.nhs.uk%7C6cbde94c61a4438b36cd08dd3faf05bb%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638736743120072047%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=Oo2fPcqOZUzrKaw3P6HDEyhRKpb2M6oZtsp%2FvHQj4Ak%3D&reserved=0

• REC name

  North West - Greater Manchester Central Research Ethics Committee

• REC reference

  21/NW/0254

• Date of REC Opinion

  12 Aug 2021

• REC opinion

  Favourable Opinion