Retinoblastoma (Rb) is the most common intraocular tumor in childhood. Approximately one-third of the cases are bilaterally affected. The cure rates have improved but the data on psychosocial quality of life are limited.
We analyzed the psychosocial domain quality of life (QOL) in 30 survivors of bilateral Rb using PedsQLTM 4.0 generic core scale in local language, which has been validated in the Indian population. The self-reported questionnaire was filled in by children of more than 5 years of age who had completed treatment for more than 12 months. The psychosocial aspect is represented by social, emotional and school domains of QOL. The QOL was compared with 25 siblings using student's t-test. Factors predicting QOL were assessed.
The median age of Rb survivors was 86 (range, 61-190) months and male:female ratio was 3:1. The median age at diagnosis was 12 (range, 1-16) months. 83% (25/30) underwent enucleation of the worst eye, whereas both eyes could be preserved in 5 patients. All the patients received VEC (Vincristine, Etoposide and Carboplatin) based chemotherapy and the median number of chemotherapy cycles was 6 (range, 6-12). Radiotherapy was given in 8/30 (26%) patients. The psychosocial QOL was significantly worse in Rb survivors compared with controls. The emotional health domains of QOL (fear, anger and sleeping) were significantly lower in Rb survivors. Difficulties in maintaining friendships and competing were reported in the social health domain. In school health domain, there was significantly higher absenteeism due to sickness and hospital visits among Rb survivors. Age, sex, IRSS stage and previous radiotherapy did not affect the psychosocial QOL.
Comparison of psychosocial QOL of survivors of bilateral retinoblastoma and their siblings