An online pain management program for people with hypermobile Ehlers-Danlos Syndrome or hypermobility spectrum...

Area of Science:

• Pain Management
• Chronic Illness
• Digital Health

Background:

• Hypermobile Ehlers-Danlos Syndrome (hEDS) and hypermobility spectrum disorder (HSD) are chronic, painful, and multi-systemic conditions.
• Currently, no dedicated online pain management programs exist for individuals with hEDS/HSD.
• There is a need to understand patient and healthcare professional perspectives to develop effective online interventions.

Purpose of the Study:

• To develop an online pain management program tailored for hEDS/HSD.
• To identify key topics and content for the program based on stakeholder input.
• To assess the acceptability and usability of the developed online program.

Main Methods:

• A Delphi methodology was employed using online surveys with hEDS/HSD patients and healthcare professionals (HCPs).
• Survey 1 gathered importance ratings for pain management topics; Survey 2 refined these based on consensus (≥75% agreement).
• The Hypermobile Online Pain managemEnt (HOPE) program was developed using consensus topics, followed by usability testing via the Systems Usability Scale (SUS).

Main Results:

• 396 hEDS/HSD patients and 29 HCPs participated in Survey 1; 151 hEDS/HSD patients and 12 HCPs in Survey 2.
• 81% of hEDS/HSD patients and 69% of HCPs deemed a specific online program important.
• Thirty-five topics reached consensus, forming the basis of the HOPE program, which achieved a high SUS score of 82.5.

Conclusions:

• Stakeholders strongly support the development of a hEDS/HSD-specific online pain management program.
• A Delphi approach effectively incorporated user needs to create an evidence-informed and user-appropriate program.
• The developed HOPE program demonstrates high acceptability and addresses a critical gap in care for hEDS/HSD.