Abstract
Purpose :
With the increased survival of Rb patients, it is important to evaluate the quality of life of Rb survivors as well as caregivers to provide comprehensive care to the children and caregivers. This study aims to assess the quality of life of survivors of Rb, as perceived by parents and the self-reported by patients through a Pediatric quality of life (PEDs -QoL).
Methods :
The study cohort included 86 RB survivors, 86 age-matched controls, and their primary carers. Peds QL 4.0 generic core scale and structured interview were administered. QOL on Physical, social, emotional, and school health was evaluated and correlated with clinical and sociodemographic parameters.
Results :
The mean age of the RB survivors is 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 of RB survivors was 70.2 SD ± 27.8: 96.15 ±13SD, emotional health 72.1±27.4SD; 94.4± 12.5 SD, social health 80.4 ±24.9 SD;98.6 ± 6.2 SD; and school health 71.9±26.5 SD;96.1 ± 12.2 SD. As per the Self-report perception, the QoL of Physical health is 68.2±27.8SD; 96.2±13SD. Emotional health 66.2±28.4SD; 95.3±12.5 SD, Social health 69.5 ±24.9 SD;98.7 ± 6.2 SD, School health 63.5±26.5 SD;95.1 ± 12.2 SD. There was a significant relationship between the enucleation and QoL domains where x2 = 67.75, df =36, and p <0.01. There was a significant association between a vision in the better eye (6/18 or better = 8, 6/18 to 6/60 =8, 3/60 or worse 42 and QoL scores were (χ2 = 95.36, df = 62, p < 0.01). There was a substantial association between socioeconomic status and quality of life domains, where x2 = 88.5 df =56, p <0.01.
Conclusions :
The results of the study show that the quality of life (QoL) of parents of retinoblastoma (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 indicate a lower quality of life 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 quality-of-life domains among individuals who have survived retinoblastoma.
This abstract was presented at the 2024 ARVO Annual Meeting, held in Seattle, WA, May 5-9, 2024.