Patient-reported outcome measures for retinoblastoma: a scoping review.
Ana JanicSylvie BowdenSarah LevyJennifer StinsonHelen DimarasPublished in: Journal of patient-reported outcomes (2020)
The study identified several PROMs from the pediatric ophthalmology and pediatric oncology literature that could be relevant to the retinoblastoma population, but many have limits to their validation. Future development of a retinoblastoma-specific PROM, performed in partnership with retinoblastoma patients to support optimal content validity, could first focus on the selection and definition of the optimal construct to measure, followed potentially by adaptation and further validation of the relevant PROMs with strong methodologic quality identified in this study.