Background: 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.
Objective: 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?
Methods: 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.
Results: 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.
Conclusions: 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.
Keywords: HAQ; Health Assessment Questionnaire; ICHOM; International Consortium for Health Outcome Measurement; NCD; PDQ; PROM; Parkinson Disease Quality of Life Questionnaire; Parkinson disease, diabetes mellitus; blogger; breast cancer; cancer; chronic disease; content analysis; content validity; cross sectional; cross-sectional; data dictionary; diabetes; experience; experiential; inductive; inductive code; narrative; noncommunicable diseases; oncology; patient stories; patient story; patient-reported outcome measure; qualitative; rheumatoid arthritis; social media; storytelling; type II diabetes.
©Diana M J Delnoij, Meggie Derks, Laura Koolen, Shuka Shekary, Jozua Suitela. Originally published in JMIR Formative Research (https://formative.jmir.org), 28.07.2023.