Navigating HOPE (Hypermobile Online Pain managemEnt): Perspectives and Experiences From People With Hypermobile Ehlers–Danlos Syndrome or Hypermobility Spectrum Disorder on a Condition-Specific Online Pain Management Programme

IF 3.2 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES Health Expectations Pub Date : 2025-02-17 DOI:10.1111/hex.70186

Min Tze Chew, Emre Ilhan, Sarah Dennis, Leslie L. Nicholson, Sarah Kobayashi, Cliffton Chan

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Abstract

Introduction

The Hypermobile Online Pain managemEnt (HOPE) programme is a stakeholder informed intervention adopting the biopsychosocial pain approach, specifically for people with hypermobile Ehlers–Danlos Syndrome (hEDS) and hypermobility spectrum disorder (HSD) experiencing pain. The programme topics included were based on a modified Delphi of a large sample of stakeholders: people with hEDS/HSD and healthcare practitioners who are experienced with managing these conditions. Programme feasibility, acceptability and appropriateness were previously evaluated quantitatively in a pilot randomised controlled trial, but the in-depth experiences and perceptions of participants who engaged with the programme is unknown.

Methods

Qualitative study. 1:1, semi-structured online interviews of participants who took part in the HOPE programme. Data was analysed using an inductive thematic analysis approach as described by Braun and Clark.

Results

Twelve participants were interviewed; 91% were female, mean age 38.1 (SD 9.1). Four themes emerged: (1) The biopsychosocial approach to understanding pain used in the HOPE programme was acceptable and appropriate, (2) benefits of the programme were stronger for those who were newer on their hEDS/HSD journey, (3) self-guided reflections included in the programme required headspace and personal meaning and (4) participants desired more adaptable content and programme functionality. Additionally, participants gave suggestions on how to improve the content, adherence and engagement to the programme.

Conclusion

The HOPE programme was considered feasible, acceptable and appropriate for people with hEDS/HSD. The four themes and suggestions from our study findings will be used to refine subsequent versions and large-scale trials of the HOPE programme, as well as provide translatable insights for other online interventions for hEDS/HSD or similar complex, chronic multisystemic conditions.

Patient or Public Contribution

A large community of hEDS/HSD patients' and healthcare providers' input were obtained from a two-staged online Delphi from a prior study. This approach was preferred to capture the greatest amount of feedback from a diverse international voice. Via the Delphi study, they provided suggestions for content topics and consensus on what they felt were important to include in a hEDS/HSD specific online pain management programme, as well as programme parameters (e.g., duration and frequency of programme; healthcare provider telehealth component; types of learning activities).

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导航希望（过度移动在线疼痛管理）：从过度移动埃勒斯-丹洛斯综合征或过度移动谱系障碍的人的观点和经验，在一个条件特定的在线疼痛管理计划

超移动在线疼痛管理（HOPE）项目是一项利益相关者知情的干预措施，采用生物心理社会疼痛方法，专门针对患有超移动ehers - danlos综合征（hEDS）和超移动谱系障碍（HSD）的人。所包括的方案主题是基于对大量利益攸关方样本的修正德尔菲法得出的，这些利益攸关方包括：hEDS/HSD患者和管理这些疾病经验丰富的医疗保健从业人员。计划的可行性、可接受性和适当性之前在一项试点随机对照试验中进行了定量评估，但参与计划的参与者的深入经验和看法是未知的。方法定性研究。对参与HOPE计划的参与者进行1:1的半结构化在线访谈。数据分析使用归纳主题分析方法，如布劳恩和克拉克所述。结果共访谈12人；91%为女性，平均年龄38.1岁（SD 9.1）。出现了四个主题：(1)在HOPE项目中使用的理解疼痛的生物心理社会方法是可以接受和适当的；(2)对于那些刚开始hEDS/HSD旅程的人来说，该项目的好处更大；(3)项目中包含的自我引导反思需要头脑空间和个人意义；(4)参与者希望更有适应性的内容和项目功能。此外，与会者就如何改善课程内容、坚持和参与提出了建议。结论HOPE方案对hEDS/HSD患者是可行的、可接受的和合适的。我们研究结果的四个主题和建议将用于改进HOPE项目的后续版本和大规模试验，并为其他针对hEDS/HSD或类似复杂、慢性多系统疾病的在线干预措施提供可翻译的见解。患者或公众的贡献从先前研究的两阶段在线德尔菲中获得了大量hEDS/HSD患者和医疗保健提供者的意见。这种方法是为了从不同的国际声音中获得最多的反馈。通过德尔菲研究，他们对内容主题提出了建议，并就他们认为重要的内容达成共识，包括在hEDS/HSD特定的在线疼痛管理计划中，以及计划参数(例如，计划的持续时间和频率；医疗保健提供者远程保健组件；学习活动的类型)。

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来源期刊

Health Expectations 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.20

自引率

9.40%

发文量

251

审稿时长

>12 weeks

期刊介绍： Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including: • Person-centred care and quality improvement • Patients'' participation in decisions about disease prevention and management • Public perceptions of health services • Citizen involvement in health care policy making and priority-setting • Methods for monitoring and evaluating participation • Empowerment and consumerism • Patients'' role in safety and quality • Patient and public role in health services research • Co-production (researchers working with patients and the public) of research, health care and policy Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.