Sheffield Health and Related Research, The University of Sheffield, Sheffield, UK.
Crohn's & Colitis UK, Hatfield, UK.
Health Expect. 2023 Feb;26(1):213-225. doi: 10.1111/hex.13647. Epub 2022 Nov 6.
Patient-Reported Experience Measures (PREMs) are key in improving healthcare quality, but no PREM exists for inflammatory bowel disease (IBD). This study aimed to co-produce a PREM with IBD service users for IBD service evaluation and quality improvement programme.
A pool of 75 items was drawn from published survey instruments covering interactions with services and aspects of living with IBD. In Stage 1, during two workshops, eight expert service users reduced candidate items through a ranked-choice voting exercise and suggested further items. During Stage 2, 18 previously uninvolved people with IBD assessed the face and content validity of the candidate items in 'Think Aloud' interviews. During two final workshops (Stage 3), the expert service users removed, modified and added items based on the interview findings to produce a final version of the PREM.
Stage 1 generated a draft working PREM mapped to the following four domains: Patient-Centred Care; Quality; Accessibility; Communication and Involvement. The PREM included a set of nine items created by the expert group which shifted the emphasis from 'self-management' to 'living with IBD'. Stage 2 interviews showed that comprehension of the PREM was very good, although there were concerns about the wording, IBD-relevance and ambiguity of some items. During the final two workshops in Stage 3, the expert service users removed 7 items, modified 15 items and added seven new ones based on the interview findings, resulting in a 38-item PREM.
This study demonstrates how extensive service user involvement can inform PREM development.
Patients were involved as active members of the research team and as research participants to co-produce and validate a PREM for IBD services. In Stage 1, eight expert service users ('the expert group') reduced candidate items for the PREM through a voting exercise and suggested new items. During Stage 2, 18 previously uninvolved people with IBD (the 'think aloud' participants) assessed the validity of the candidate items in 'Think Aloud' interviews as research participants. In Stage 3, the expert group removed, changed and added items based on the interview findings to produce a final version of the 38-item PREM. This study shows how service user involvement can meaningfully inform PREM development.
患者报告体验测量（PREMs）是改善医疗质量的关键，但目前还没有针对炎症性肠病（IBD）的 PREM。本研究旨在为 IBD 服务评估和质量改进计划与 IBD 服务使用者共同制定一个 PREM。
从涵盖与服务互动和 IBD 生活方面的已发表调查工具中抽取了 75 个项目。在第 1 阶段，通过排名选择投票练习，8 名专家服务用户在两次研讨会上减少了候选项目，并提出了其他项目。在第 2 阶段，18 名以前未参与的 IBD 患者在“思考 aloud”访谈中评估候选项目的表面和内容有效性。在最后两次研讨会（第 3 阶段）中，根据访谈结果，专家服务用户删除、修改和添加项目，以生成 PREM 的最终版本。
第 1 阶段生成了一个映射到以下四个领域的 PREM 草案：以患者为中心的护理；质量；可及性；沟通和参与。PREM 包括专家组创建的一组九项内容，将重点从“自我管理”转移到“与 IBD 一起生活”。第 2 阶段的访谈表明，PREM 的理解非常好，尽管有些人对措辞、IBD 相关性和一些项目的模糊性表示担忧。在第 3 阶段的最后两次研讨会上，根据访谈结果，专家服务用户删除了 7 个项目，修改了 15 个项目，并添加了 7 个新项目，最终得到一个 38 项的 PREM。
本研究展示了广泛的服务用户参与如何为 PREM 开发提供信息。
患者作为研究团队的积极成员和研究参与者参与其中，共同制定和验证了 IBD 服务的 PREM。在第 1 阶段，8 名专家服务用户（“专家组”）通过投票活动减少了 PREM 的候选项目，并提出了新的项目。在第 2 阶段，18 名以前未参与的 IBD 患者（“思考 aloud”参与者）作为研究参与者，在“思考 aloud”访谈中评估了候选项目的有效性。在第 3 阶段，专家组根据访谈结果删除、更改和添加项目，以生成最终版本的 38 项 PREM。这项研究表明，服务用户的参与如何能为 PREM 开发提供有意义的信息。
