Visiting Scholar Presentation (VSP) - How (and why) do you measure quality of life with PROMs?

Patient ratings (patient-reported outcomes) can differ from clinical outcomes. To get information on the patient’s point of view, you need information on quality of life. Quality of life is broader than only symptoms and functioning, but also socio-emotional wellbeing, finances, etc. Quality of life is specific for each different eye condition (for example, retinal detachment vs. macular hole, only 50% overlap). If you want to measure quality of life, preferably use a validated questionnaire (or PROM, patient-reported outcome measure). Current PROMs for retinal detachment, macular hole, epiretinal membrane, vitreomacular traction, and vitreous floaters have irrelevant or limited content, because patients were not involved when creating the questions in the PROM. They are also rarely validated. In the Rotterdam Eye Hospital (The Netherlands), we will develop and validate three disease-specific PROMs for these eye conditions. To develop the content of the PROMs, we did a systematic literature review and performed in-depth interviews with 142 patients about their experienced QOL. The pilot PROMs have been subjected to cognitive interviews. We are translating the pilot PROMs to Turkish, Arabic, and English. Over the next two years, we will evaluate the psychometric properties of the PROMs. We started in August 2023, and as of October 5th 126 patients have filled out the PROM for retinal detachment. Eventually, the PROMs will be administerd via computerized adaptive testing (CAT). This method allows for precise measurement with less questions asked, decreasing respondent burden.