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.

超活动型艾赫勒-丹洛斯综合征（hEDS）和超活动型谱系障碍（HSD）为一种痛苦、慢性且多系统性的疾病。目前尚无针对hEDS/HSD的在线疼痛管理项目。本研究旨在通过探究hEDS/HSD患者对于此类项目所期望的内容来开发此类项目。通过Recap和Lime Survey平台，对两组利益相关者——hEDS/HSD患者和医疗保健专业人员（HCP）——进行了一项德尔菲法研究。开展了两轮调查。利用达成共识的主题，开发了在线项目。采用系统可用性量表（SUS）进行了可用性测试。通过德尔菲法整合利益相关者的意见，建立了一个基于证据且针对特定队列的项目。