Quality of life of Retinoblastoma survivors in tertiary care eye hospital in South India

Purpose: With the increased survival of retinoblastoma (RB) patients, it is important to evaluate the quality of life (QoL) of RB survivors as well as caregivers to provide comprehensive care to the children and caregivers. This study aims to assess the QoL of survivors of RB, as perceived by parents and the self-report by patients, through a pediatric QoL (PEDs-QoL) questionnaire. Methods: The study cohort included 86 RB survivors, 86 age-matched controls, and their primary carers. PedsQL 4.0 generic core scale and structured interview were administered. QoL in physical, social, emotional, and school health was evaluated and correlated with clinical and sociodemographic parameters. Results: The mean age of the RB survivors was 5.7 years with an M:F ratio of 1.1:1. Disease was bilateral in 79% of cases. About 45% (39/86) underwent enucleation, while others received combination therapy (16; 18%), chemotherapy (30; 34%), and radiation (1; 1%). As reported by parents, the QoL of physical health domain of RB survivors was 70.2 SD +/- 27.8 and 96.15 +/- 13 SD, emotional health was 72.1 +/- 27.4 SD and 94.4 +/- 12.5 SD, social health was 80.4 +/- 24.9 SD and 98.6 +/- 6.2 SD; and school health was 71.9 +/- 2 6.5 SD and 96.1 +/- 12.2 SD. As per the self-report perception, the QoL of physical health was 68.2 +/- 27.8 SD and 96.2 +/- 13 SD, emotional health was 66.2 +/- 28.4 SD and 95.3 +/- 12.5 SD, social health was 69.5 +/- 24.9 SD and 98.7 +/- 6.2 SD, and school health was 63.5 +/- 26.5 SD and 95.1 +/- 12.2 SD. There was a significant relationship between enucleation and QoL domains, where chi(2) = 67.75, degrees of freedom (df) = 36, and P < 0.01. There was a significant association between vision in the better eye (6/18 or better = 8, 6/18-6/60 = 8, 3/60 or worse = 42) and QoL scores (chi(2) = 95.36, df = 62, P < 0.01). There was a substantial association between socioeconomic status and QoL domains, where chi(2 )= 88.5, df = 56, P < 0.01. Conclusion: The results of the study showed that the QoL of parents of RB survivors and self-proxy reports were negatively affected in many ways, including physical, social, emotional, and school-related dimensions. Despite the small differences, self-proxy reports indicated a lower QoL than the parents' group. The study findings indicate that there are notable correlations between enucleation and visual acuity less than 6/18, as well as socioeconomic status, with various aspects of QoL domains among individuals who have survived RB.