An online pain management program for people with hypermobile Ehlers-Danlos Syndrome or hypermobility spectrum disorder: a three-staged development process

Min Tze Chew; Emre Ilhan; Leslie L Nicholson; Sarah Kobayashi; Cliffton Chan

doi:10.1080/09638288.2024.2351180

An online pain management program for people with hypermobile Ehlers-Danlos Syndrome or hypermobility spectrum disorder: a three-staged development process

Disabil Rehabil. 2024 May 13:1-11. doi: 10.1080/09638288.2024.2351180. Online ahead of print.

Authors

Min Tze Chew¹, Emre Ilhan¹, Leslie L Nicholson¹, Sarah Kobayashi², Cliffton Chan²

Affiliations

¹ Department of Health Sciences, Faculty of Medicine, Health and Human Sciences, Macquarie University, Sydney, NSW, Australia.
² Kolling Institute, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia.

PMID: 38738812
DOI: 10.1080/09638288.2024.2351180

Abstract

Purpose: Hypermobile Ehlers-Danlos Syndrome (hEDS) and hypermobility spectrum disorder (HSD) are painful, chronic and multi-systemic conditions. No online pain management programs for hEDS/HSD currently exist. We aimed to develop one by exploring what people with hEDS/HSD want in such programs.

Materials and methods: A Delphi was conducted via online surveys of stakeholders: participants with hEDS/HSD and healthcare professionals (HCP). In survey 1, participants were asked if a hEDS/HSD-specific online pain management program was important, listing up to 20 topics important to know about pain. In survey 2, participants rated the importance of those topics. Consensus was set as ≥75% rating of at least "important". Using topics that reached consensus, the online program was developed. Usability testing was performed using the Systems Usability Scale (SUS).

Results: 396 hEDS/HSD and 29 HCP completed survey 1; 151 hEDS/HSD and 12 HCP completed survey 2. 81% of hEDS/HSD and 69% of HCP rated a hEDS/HSD-specific program as at least "important". Thirty-five topics reached consensus to guide content for the HOPE program (Hypermobile Online Pain managemEnt). SUS score was 82.5, corresponding to "high acceptability".

Conclusions: A hEDS/HSD-specific online pain management program is important to stakeholders. Utilising a Delphi approach to incorporate stakeholder input, an evidence-informed and user appropriate program was developed.

Keywords: Delphi; biopsychosocial; chronic pain; connective tissue disorders; usability.

Plain language summary

Pain is one of the most common and impactful symptom affecting those with Hypermobile Ehlers-Danlos Syndrome (hEDS) and hypermobility spectrum disorder (HSD).Online pain management programs are effective in other chronic conditions such as Fibromyalgia and Rheumatoid Arthritis, but there are no programs specific for hEDS/HSD.People with hEDS or HSD and healthcare professionals with experience in these conditions feel that an online pain management program specific to their condition is important; consensus revealed thirty-five key topics important to these stakeholders.The first hEDS/HSD-specific online pain management program, called HOPE, was developed with stakeholder input and usability tested, ready for clinical trial testing.