Development and impact of a tailored eHealth resource on fibromyalgia patient's self-management and self-efficacy: A mixed methods approach

Abstract

Aim: To develop an eHealth resource to support fibromyalgia patients and explore it for usability and impact on their self-management and self-efficacy.

Background: Fibromyalgia is a complex, non-progressive chronic condition characterised by a bewildering array of symptoms for patients to self-manage. International guidelines recommend patients receive illness-specific information once diagnosed to promote self-management and improve health-related quality of life.

Design: A 3-phase mixed methods exploratory sequential design.

Methods: Qualitative interviews explored the information and self-management needs of fibromyalgia patients attending a large tertiary hospital in Dublin. Identified themes together with an extensive review of the literature of interventions proven to be impactful by patients with fibromyalgia were utilised in the design and development of the eHealth resource. The resource was tested for usability and impact using pre and post-intervention outcomes measures.

Results: Patient interviews highlighted a lack of easy accessible evidenced information to support self-management implicating the urgent need for a practical solution through development of a tailored eHealth resource. Six themes emerged for inclusion; illness knowledge, primary symptoms, treatment options, self-management strategies, practical support and reliable resources. Forty-five patients who tested the site for usability and impact demonstrated a statistically significant improvement in self-efficacy after 4 weeks access with a medium positive effect size. Patients with the most severe fibromyalgia impact scores pre-intervention demonstrated the most improvement after 4 weeks. Patients gave the resource a System Usability Score A rating, highly recommending it for fellow patients diagnosed with fibromyalgia.

Conclusions: The study demonstrated how the development of a novel eHealth resource positively impacted fibromyalgia patients' self-efficacy to cope with this debilitating condition.

Impact: This study suggests that access to eHealth can positively impact patients self-efficacy, has the potential to be a template for eHealth development in other chronic conditions, supporting advanced nurse practitioners working in chronic disease management.

Keywords: Chronic pain; advanced nursing practice; eHealth; fibromyalgia; pain management; self-managment.

Figure 1.

Centre for eHealth Research and Disease Management (CeHRes) Roadmap – Stages and Research Tasks.

Figure 2.

Illustration MyFibroFacts pain diary, Phase 2.

Figure 3.

Participant recruitment process.