Delnoij Diana M J, Derks Meggie, Koolen Laura, Shekary Shuka, Suitela Jozua
Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, Netherlands.
National Health Care Institute (Zorginstituut Nederland), Diemen, Netherlands.
JMIR Form Res. 2023 Jul 28;7:e43210. doi: 10.2196/43210.
Patient-reported outcome measures (PROMs) are questionnaires that measure patient outcomes related to quality of life, health, and functioning, and are increasingly used to assess important outcomes from the patient's perspective. For PROMs to contribute to better health and better care, it is vital that their content validity be adequate. This requires patient involvement in various steps of PROM development. PROM developers not only recognize the benefits of patient involvement but also report difficulties in recruiting patients and experience patient involvement as time-consuming, logistically challenging, and expensive.
This study seeks to explore different strategies for disclosing the experiential knowledge of patients, namely through analyzing patient stories on the web and social media. The research questions are as follows: (1) how do bloggers living with a disease experience their health-related quality of life? (2) How are these experiences reflected in the domains and items of PROMs related to their disease?
First, a qualitative analysis of blogs written by patients was performed. Second, subthemes and underlying codes resulting from this qualitative analysis were systematically compared with the domains and items in PROMs for the respective diseases that the bloggers write about. Blogs were identified via the Google search engine between December 2019 and May 2021.
Bloggers describe a wide range of experiences regarding their physical functioning and health; mental well-being; social network and support; daily life, education, work, and leisure; coping; and self-management. Bloggers also write about their positive and negative experiences with health care delivery, the organization of health care, and health care professionals. In general, patients' experiences as described in blogs were reflected in the domains and items of the PROMs related to their disease. However, except for diabetes mellitus, in all the sets of PROMs, potentially missing topics could be identified. Similarly, with the exception of Parkinson disease, all PROMs address issues that patients did not write about in their blogs and that might therefore be redundant.
Web-based patient stories in the form of blogs reveal how people living with a certain disease experience their health-related quality of life. These stories enable analyses of patients' experiences that can be used to assess the content validity of PROMs. This can be a useful step for researchers who are looking for sets of measuring instruments that match their purposes.
患者报告结局测量工具（PROMs）是用于测量与生活质量、健康及功能相关的患者结局的问卷，并且越来越多地用于从患者角度评估重要结局。为使PROMs有助于改善健康和提供更好的医疗服务，其内容效度必须充分。这需要患者参与PROMs开发的各个步骤。PROMs开发者不仅认识到患者参与的益处，还报告了招募患者存在困难，且认为患者参与耗时、在后勤方面具有挑战性且成本高昂。
本研究旨在探索披露患者经验性知识的不同策略，即通过分析网络和社交媒体上的患者故事。研究问题如下：（1）患有某种疾病的博主如何体验其与健康相关的生活质量？（2）这些体验如何在与他们疾病相关的PROMs的领域和条目 中得到体现？
首先，对患者撰写的博客进行定性分析。其次，将该定性分析得出的子主题和潜在编码与博主所写相应疾病的PROMs中的领域和条目进行系统比较。2019年12月至2021年5月期间通过谷歌搜索引擎识别博客。
博主描述了关于其身体功能与健康、心理健康、社交网络与支持、日常生活、教育、工作和休闲、应对以及自我管理等方面的广泛经历。博主还讲述了他们在医疗服务提供、医疗保健组织以及医护人员方面的正面和负面经历。总体而言，博客中描述的患者经历在与他们疾病相关的PROMs的领域和条目 中得到了体现。然而，除糖尿病外，在所有PROMs组中，均可识别出可能遗漏的主题。同样，除帕金森病外，所有PROMs都涉及患者在博客中未提及的问题，因此可能是多余的。
以博客形式呈现的基于网络的患者故事揭示了患有某种疾病的人如何体验其与健康相关的生活质量。这些故事能够对患者的经历进行分析，可用于评估PROMs的内容效度。对于正在寻找符合其目的的测量工具集的研究人员而言，这可能是有用的一步。
