The raw data files for "An online pain management program for people with hypermobile Ehlers-Danlos syndrome or Hypermobility Spectrum Disorder: a three-staged development process"

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.A Delphi was conducted via Recap and Lime Survey platforms of two stakeholder groups: participants with hEDS/HSD and healthcare professionals (HCP). Two rounds surveys were conducted. Using topics that reached consensus, the online program was developed. Usability testing was performed using the Systems Usability Scale (SUS). Utilising a Delphi approach to incorporate stakeholder input, an evidence-informed and cohort specific program was established.