Background Remote delivery may improve access to pulmonary rehabilitation (PR). Existing studies are largely limited to individuals with COPD, and the interventions have lacked codesign elements to reflect the needs and experiences of people with chronic respiratory disease, their carers/families and healthcare professionals. The aim of this study was, using experience-based codesign (EBCD), to collaborate with people with interstitial lung disease (ILD), their carers/families and healthcare professionals, to codesign a remote PR programme ready for testing in a future study. Methods EBCD comprises interviews, stakeholder workshops and codesign meetings. One-to-one videorecorded interviews with purposively selected people with ILD with experience of PR, their carers/families and healthcare professionals, were edited into a 20 min film. The film was shown at three audiorecorded stakeholder feedback events to identify key themes and touchpoints, and short-list key programme components. The programme was finalised at two further codesign workshops. Results Ten people with ILD, four carers/families and seven healthcare professionals were interviewed. Participants in the codesign workshops included service-user group: n=14 and healthcare professional group: n=11; joint event: n=21. Final refinements were made with small codesign teams, one comprising three people with ILD and one carer/family member, one with five healthcare professionals. The final codesigned model is a group based, supervised programme delivered by videoconference. Key elements of programme specific to ILD include recommendations to ensure participant safety in the context of desaturation risk, dedicated time for peer support and adaption of the education programme for ILD needs, including signposting to palliative care. Conclusion In this EBCD project, a remote PR programme for people with ILD was codesigned by service-users, their carers/families and multidisciplinary healthcare professionals. Future research should explore the feasibility and acceptability of this intervention. Data are available on reasonable request.

中文翻译：

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间质性肺疾病的远程肺​​康复：使用基于经验的协同设计开发模型

背景 远程交付可以改善肺康复 (PR) 的机会。现有的研究主要限于慢性阻塞性肺病患者，干预措施缺乏共同设计元素来反映慢性呼吸道疾病患者、他们的护理人员/家人和医疗保健专业人员的需求和经历。本研究的目的是，使用基于经验的协同设计 (EBCD) 与间质性肺疾病 (ILD) 患者、他们的护理人员/家人和医疗保健专业人员合作，共同设计一个远程 PR 项目，为未来的研究做好测试准备。方法 EBCD 包括访谈、利益相关者研讨会和协同设计会议。对特意挑选的具有公关经验的 ILD 患者、他们的护理人员/家人和医疗保健专业人员进行一对一的录像采访，并被剪辑成一部 20 分钟的电影。该影片在三场有录音的利益相关者反馈活动中放映，以确定关键主题和接触点，并列出关键项目组成部分。该计划在另外两次协同设计研讨会上最终确定。结果 十名 ILD 患者、四名护理人员/家庭和七名医疗保健专业人员接受了采访。协同设计研讨会的参与者包括服务用户组：n=14 和医疗保健专业组：n=11；联合事件：n=21。最终的改进是由小型联合设计团队进行的，其中一个团队由三名 ILD 患者和一名护理人员/家庭成员组成，另一个团队由五名医疗保健专业人员组成。最终的协同设计模型是通过视频会议交付的基于小组的监督计划。针对 ILD 的计划的关键要素包括在饱和度降低风险的情况下确保参与者安全的建议、同伴支持的专门时间以及根据 ILD 需求调整教育计划，包括姑息治疗的路标。结论 在这个 EBCD 项目中，针对 ILD 患者的远程 PR 计划是由服务使用者、他们的护理人员/家人和多学科医疗保健专业人员共同设计的。未来的研究应该探讨这种干预的可行性和可接受性。可根据合理要求提供数据。