JMIR Publications

ABSTRACT

Background:

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 is adequate. This requires patient involvement in various steps of PROM development. PROM developers 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:

Therefore, this study seeks to explore different strategies for disclosing the experiential knowledge of patients, namely through analyzing patient stories on the internet and social media. The research questions are: How do bloggers living with a disease experience their health-related quality of life? How are these experiences reflected in the domains and items of Patient Reported Outcome Measures related to their disease?

Methods:

Firstly, a qualitative analysis of blogs written by patients took place. Secondly, (sub)themes and underlying codes emerging from this qualitative analysis have been systematically compared to the domains and items in PROMs for the respective diseases that the bloggers write about. Blogs were collected between December 2019 and May 2021.

Results:

Bloggers experiences can be described using six overarching themes: physical functioning and health; mental wellbeing; social network and support; daily life, education, work, and leisure; coping and self-management; experiences with healthcare. All themes emerge in every patient group, however, their occurrence differs. Bloggers living with rheumatoid arthritis most frequently write about physical functioning and health (58% of quotations), those living with Parkinson’s disease and living with or surviving breast cancer write mostly about mental wellbeing (respectively 78 and 28% of quotations), and those living with diabetes mellitus write mostly about experiences with healthcare (39%). 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’s disease, all PROMs address issues that patients did not write about in their blogs and that might therefore be redundant.

Conclusions:

Online 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 which reflect outcomes that matter to patients. Clinical Trial: Not applicable