Year: 2020
Type: dissertation
Abstract: Background: Patient-reported outcome measures (PROMs) are self-report instruments measuring health outcomes from the patient perspective. A retinoblastoma PROM could provide important insight into patient outcomes. Objectives: Characterize PROMs currently used in retinoblastoma, pediatric ophthalmology, and pediatric oncology; explore retinoblastoma survivor and parent views on treatment outcomes. Methods: A scoping review identified and analyzed relevant PROMs. Results informed a qualitative study to determine parent and survivor opinions on treatment outcomes. Results: One retinoblastoma-specific, 56 pediatric ophthalmology, and 86 pediatric oncology PROMs were identified and considered for their application to retinoblastoma. Seventeen retinoblastoma survivors and 9 parents, participated in discussions. A need for a PROM measuring psychosocial impact, daily functioning, cosmetic outcomes, and retinoblastoma education was identified. Conclusion: Existing PROMs can be modified for application to retinoblastoma, there are also additional retinoblastoma-specific domains to consider. Next steps include dissemination of results to experts and patients in research to plan further development.
Source: TSpace (University of Toronto)
Author: Ana Janić
Language: English
Field: Medicine
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W3153335328