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
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.Lay summary of study results
Background to the study
The study was conducted at East Kent Hospitals University Foundation Trust and ran from February 2023-December 2023. Funding was received from the Research and Innovation department and completed as part of a Masters by Research at Canterbury Christ Church University.
The study was a mixed methods evaluation study. It aimed to explore an online education intervention that was delivered at a South East England Hospital Trust, to determine if the education intervention should be offered to patients with a new diagnosis of fibromyalgia. Alongside this, as part of routine care, the study aimed to review patient’s levels of health activation. The Patient Activation Measure (PAM) scores were used to determine patient’s levels of skills and confidence to manage their condition alongside exploring patient’s views and possible barriers around this.
The study participants received routine care of receiving the online fibromyalgia patient education intervention. 18 patients who had received a recent diagnosis of fibromyalgia attended focus groups. With thanks to all of the study participants as without your participation the study could not have been completed.
There were no adverse events during the study.
Study 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 online education intervention offered. It was viewed positively and valued. The topics and depth of information provided were reported to be helpful and suitable, with online being a suitable platform Quantitative analysis of PAM scores and interpretation of the focus group data, patients were found to have a low level of health activation, or low skills and confidence to self-manage their condition at diagnosis. Following completion of the education intervention, data showed a possible trend towards increased skills and confidence, but not statistically significant p<.226. The study participant data aligned with routine care.
The future
The patient online education intervention should be offered and will be continued.
Patients have a low level of skills and confidence to self-manage their condition at diagnosis and following the online education intervention, and this highlights the need to provide support to patients at diagnosis. There is a need for future research to consider how to increase patient health activation. This study also provides new insights into the patient journey with common themes being identified that warrant further exploration to shape future long-term self-management of fibromyalgia.
The aim is to publish the results of the study in due course.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