fibromyaLgia EducAtion foR people with a New diagnosis (LEARN)
Research type
Research Study
Full title
fibromyaLgia EducAtion foR people with a New diagnosis (LEARN)
IRAS ID
315100
Contact name
Hannah Chambers
Contact email
Sponsor organisation
East Kent Hospitals University NHS Foundation Trust
Duration of Study in the UK
0 years, 5 months, 1 days
Research summary
Fibromyalgia is a long-term condition that is multitudinous and difficult to manage. It is a condition that is thought to affect approximately 1-2% of the population. People with fibromyalgia present with a combination of symptoms. Widespread pain is often the predominant feature but is typically in combination with poor sleep, fatigue, low mood, cognitive impairment and irritable bowel. These features are included in the diagnostic criteria as set out by the ACR (American College of Rheumatology) in 1990, with an 18 tender points test.
Evidence suggests a graduated approach to managing fibromyalgia. The first management to be offered should be patient education.
Structured education was not previously offered for people at diagnosis at EKHUFT. A new service was set up to provide patient education for people with a new diagnosis of fibromyalgia. A consultation with the charity Fibromyalgia Action UK took place to determine the topics of education that people wished to know about. Topics included, ‘What is fibromyalgia?’ ‘Pain’, ‘Medication’, ‘Sleep’, ‘Mindfulness’, ‘Nutrition’, ‘Exercise’ and ‘Welfare/Benefits’. The education is delivered by viewing pre-recorded presentations. A link to access the education is emailed to the patient. At baseline, as part of our standard practice, a Patient Activation Measure (PAM) to measure health activation is completed by the patient.
It is not currently known if people’s level of health activation or score changes following viewing the education. It is unknown if people’s ability to self manage their fibromyalgia improves following viewing the education. We need to determine people’s views and experience of the education and the service that is offered alongside the PAM scores. To understand this, small focus groups to explore participants views and experience will take place following completion of the education alongside completing a repeat PAM.REC name
East of England - Cambridge East Research Ethics Committee
REC reference
22/EE/0234
Date of REC Opinion
21 Oct 2022
REC opinion
Further Information Favourable Opinion