Can the design, development and examination of an eHealth self-management resource facilitate improved self-management outcomes, enhance self-efficacy and impact fibromyalgia patients’ global impression of change?: a mixed-methods sequential study
Creators: name: Kelly, Joanne O'Brien
Publisher: name: Royal College of Surgeons in Ireland
Year: 2023
Subjects: classificationCode: 420306
subject: Health care administration

description: Fibromyalgia is a complex, non-progressive chronic pain condition characterised by pain, sleep disturbance, fatigue, psychological distress, cognitive symptoms and reduced quality of life,which presents a difficult array of symptoms for patients to self-manage. The condition appears to be more common in females than males and is thought to have a worldwide prevalence of between 2±12% of the general population. The prevalence of fibromyalgia in Ireland is not known,although the prevalence of people living with chronic pain of more than 3 months is estimated to be36%. Evidence for effective treatment of fibromyalgia is limited and is focused on improving patients function, symptom management and optimizing quality of life. Internationalguidelines recommend patients receive illness specific information once diagnosed in order to reduce anxiety, promote self-management and improve health-related quality of life. There are no fibromyalgia specific self-management interventions for patients diagnosed with fibromyalgia in Ireland and the information and self-management supports needed for this patient cohort has not yet been explored. The aim of this study at the outset was to develop an eHealth self-management information resource for fibromyalgia patients and to explore its usability and effect on patients self-management, self-efficacy and global impression of change.This study employed a 3-phase mixed methods exploratory sequential research design. Phase 1 explored the information and self-management needs of patients with fibromyalgia. Phase 2 involved the design and development of an eHealth resource informed by the information and self-management needs identified in Phase 1, together with an extensive review of the literature to identify self-management interventions proven to be impactful. Phase 3 tested the eHealth resource FibromyalgiaMatters.ie developed during Phase 2 for usability and impact on fibromyalgia patients self-management, self-efficacy and global impression of change following 4 weeks access to the site using pre- and post-intervention outcomes measures. This study identified illness representations of patientswith fibromyalgia and highlighted the lack of easy accessible evidenced based information necessary to support self-management. The results of Phase 1 implicated the urgent need for a practical solution through the development of a tailored, user friendly, evidenced eHealth resource in Phase 2. The eHealth resource FibromyalgiaMatters.ie tested in Phase 3 demonstrated a statistically significant improvement in participants (n = 45) self-efficacy after 4 weeks access to the site, with a medium effect size (p = .003, d = 0.46). However, participants self-efficacy was negatively correlated to pain (r = -.30, p= .03),indicating that participants with higher pain scores were less confident of their ability to cope with their fibromyalgia. Employment was significantly correlated to participants age (r = 0.37, p = .01) with younger participants more likely to be employed. Interestingly, participants with the most severe fibromyalgia scores pre-intervention demonstrated the most improvement after 4 weeks (r = 0.43, p = .002). Participants widely welcomed the development of the eHealth resource, rating it highly for usability with a mean (SD) system usability score of 85.38 (+16.51) with thosewho had previously attended a self-management intervention rating the resource highest (r=.30, p=.40). Participants indicated that they found the resource easy to use and all felt they would recommend it to fellow fibromyalgia patients. This research identified a gap in the provisionof easilyaccessible, clinically supported evidence based illnessspecific fibromyalgia informationurgently needed to supportfibromyalgia self-managementin patients.Thestudy demonstrated that the development of this novel eHealth resource, informed by patientscontainingcomprehensive illness specific information and self-management strategies and relevant resources has the potential to positively impact fibromyalgia patients self-efficacy to cope with this highly debilitating condition.