Trial reportEuropean journal of pain (London, England)2025
HOPE for Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD)-A Pilot Randomised Controlled Trial of Feasibility, Acceptability and Appropriateness.
Trial report in European journal of pain (London, England), 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
3 citing papers in PubMed.
- Emerging Clinical Concepts in Pain Management of Ehlers-Danlos Syndrome.Current pain and headache reports · 2026Review
- Health care supply in patients with Ehlers-Danlos syndromes and generalized hypermobility spectrum disorder: a German perspective.Orphanet journal of rare diseases · 2025Article
- Navigating HOPE (Hypermobile Online Pain managemEnt): Perspectives and Experiences From People With Hypermobile Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorder on a Condition-Specific Online Pain Management Programme.Health expectations : an international journal of public participation in health care and health policy · 2025Article
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundFeasibility and effectiveness of online pain management programs for chronic widespread pain conditions have been shown; yet, there are no empirically evaluated programs for hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD). Bridging this gap, the Hypermobile Online Pain managemEnt (HOPE) program was developed with stakeholder input to be pilot tested.
methodsWe conducted a randomised controlled trial of the HOPE program to assess Feasibility of Intervention Measure (FIM), Acceptability of Intervention Measure (AIM) and Intervention Appropriateness Measure (IAM) and eight clinical effectiveness outcomes. Intervention participants were given 8 weeks to complete 12 self-paced modules, while control participants continued treatment as usual. Participants were assessed at baseline, post-treatment and 3 months post-treatment using online surveys.
resultsSeventy-two participants were recruited and randomised. Two control participants withdrew before starting, leaving 34 controls and 36 intervention participants for analysis. In all, 81%-91% agreed/completely agreed that the HOPE program was feasible with mean FIM score of 4.3/5 (SD 0.7), 62%-76% agreed/completely agreed that it was acceptable with mean AIM score of 3.9/5 (SD 0.96) and 67%-76% agreed/completely agreed that it was appropriate with mean IAM score of 4.0/5 (SD 0.9). Only two clinical effectiveness outcomes were significantly improved in the intervention group, with moderate and small effect sizes in worst pain intensity (Cohen's d = 0.63) and impact of hypermobility (Cohen's d = 0.32) at 3 months post-intervention, respectively.
conclusionThe HOPE program seemed feasible, acceptable and appropriate, with preliminary improvements in worst pain intensity and impact of hypermobility. Our findings warrant a fully powered trial to further explore the clinical effectiveness of this online pain intervention. SIGNIFICANCE STATEMENT: Pain is of high concern among people with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD), yet there are limited online pain management resources for them. This pilot trial of the novel Hypermobile Online Pain managemEnt (HOPE) program is important in guiding the creation of evidence-based and stakeholder-relevant online resources. Promising results suggest the importance of further refinement and retesting its effectiveness before wider implementation among the hEDS/HSD population so as to empower them in pain self-management.
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