Abstract：
UNASSIGNED: 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.
UNASSIGNED: 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).
UNASSIGNED: 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\".
UNASSIGNED: 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.
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.
UNASSIGNED: 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).
UNASSIGNED: 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\".
UNASSIGNED: 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.
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.
摘要：
■超移动Ehlers-Danlos综合征（hEDS）和高移动谱系障碍（HSD）是痛苦的，慢性和多系统疾病。目前没有针对hEDS/HSD的在线疼痛管理计划。我们的目标是通过探索有hEDS/HSD的人在这些程序中想要什么来开发一个。
■Delphi是通过对利益相关者的在线调查进行的：hEDS/HSD参与者和医疗保健专业人员（HCP）。在调查1中，参与者被问及hEDS/HSD特定的在线疼痛管理计划是否重要，列出多达20个关于疼痛的重要话题。在调查2中，参与者对这些主题的重要性进行了评估。共识被设定为至少“重要”的≥75%评级。使用达成共识的主题，在线程序已经开发。使用系统可用性量表(SUS)进行可用性测试。
■396hEDS/HSD和29个HCP完成了调查1；151hEDS/HSD和12个HCP完成了调查2。81％的hEDS/HSD和69％的HCP将hEDS/HSD特定计划评为至少“重要”。35个主题达成共识，以指导HOPE计划（HypermobileOnlinePainmanagemEnt）的内容。SUS评分为82.5，相当于“高可接受性”。
■针对hEDS/HSD的在线疼痛管理计划对利益相关者很重要。利用Delphi方法纳入利益相关者的输入，开发了一个证据知情和用户适当的程序。
疼痛是影响HypermobileEhlers-Danlos综合征（hEDS）和高移动谱系障碍（HSD）患者的最常见和最有影响的症状之一。在线疼痛管理计划对其他慢性疾病如纤维肌痛和类风湿关节炎有效，但没有专门针对hEDS/HSD的程序。患有hEDS或HSD的人以及具有这些疾病经验的医疗保健专业人员认为，针对其病情的在线疼痛管理计划很重要；共识揭示了对这些利益相关者重要的35个关键主题。第一个hEDS/HSD特定的在线疼痛管理计划，叫做希望，是在利益相关者输入和可用性测试的情况下开发的，准备好进行临床试验测试。
■Delphi是通过对利益相关者的在线调查进行的：hEDS/HSD参与者和医疗保健专业人员（HCP）。在调查1中，参与者被问及hEDS/HSD特定的在线疼痛管理计划是否重要，列出多达20个关于疼痛的重要话题。在调查2中，参与者对这些主题的重要性进行了评估。共识被设定为至少“重要”的≥75%评级。使用达成共识的主题，在线程序已经开发。使用系统可用性量表(SUS)进行可用性测试。
■396hEDS/HSD和29个HCP完成了调查1；151hEDS/HSD和12个HCP完成了调查2。81％的hEDS/HSD和69％的HCP将hEDS/HSD特定计划评为至少“重要”。35个主题达成共识，以指导HOPE计划（HypermobileOnlinePainmanagemEnt）的内容。SUS评分为82.5，相当于“高可接受性”。
■针对hEDS/HSD的在线疼痛管理计划对利益相关者很重要。利用Delphi方法纳入利益相关者的输入，开发了一个证据知情和用户适当的程序。
疼痛是影响HypermobileEhlers-Danlos综合征（hEDS）和高移动谱系障碍（HSD）患者的最常见和最有影响的症状之一。在线疼痛管理计划对其他慢性疾病如纤维肌痛和类风湿关节炎有效，但没有专门针对hEDS/HSD的程序。患有hEDS或HSD的人以及具有这些疾病经验的医疗保健专业人员认为，针对其病情的在线疼痛管理计划很重要；共识揭示了对这些利益相关者重要的35个关键主题。第一个hEDS/HSD特定的在线疼痛管理计划，叫做希望，是在利益相关者输入和可用性测试的情况下开发的，准备好进行临床试验测试。
