A study analyzing the health-related quality of life of retinoblastoma survivors in India

Purpose: Retinoblastoma (RB) is the commonest intraocular tumor in children. Despite high cure rates, data on health-related quality of life (HRQoL) of RB survivors are limited. This study aimed to analyze parent's perspective and self-report of HRQoL of RB survivors, using healthy siblings as controls. It also evaluated the impact of socio-economic status (SES), gender, disease laterality, treatment modality, duration since diagnosis, and visual outcomes, on HRQoL. Methods: Ninety-two RB survivors were enrolled in this observational, cross-sectional questionnaire-based study conducted at a tertiary care center. QoL was analyzed in four dimensions: physical, emotional, social, and school, using both self-report (for children >6 years) and parent proxy report (for children 2–18 years) using Pediatric Quality of Life Inventory™ (PedsQLTM) 4.0 Generic Core Scale. Seventy-seven healthy siblings served as controls. Results: The mean age of both cohorts was 5.7 years. Thirty-six (39%) patients had bilateral RB. Of the 92 survivors, 43 (47%) had undergone enucleation. The HRQoL of RB survivors was significantly lower compared to sibling controls (P < 0.01) in all four domains, the physical domain being most affected followed by social domain. Parents reported an inferior QoL than patient's self-report. Vision