Quality of life assessment in retinoblastoma: A cross-sectional study of 122 survivors.

Abstract

Retinoblastoma (Rb) is the most common intraocular tumor in childhood. With current modalities, cure rates are high and hence number of survivors is increasing. However, data on quality of life (QOL) in this population are minimal. Methods: We analyzed QOL in 122 retinoblastoma survivors using the PedsQL 4.0 generic core scale in local language, which has been validated in Indian population. The self-reported questionnaire was filled by children of more than 5 years of age who had completed treatment for more than 12 months. The questionnaire consists of 23 questions on physical, social, emotional and school domains on a scale from 0 to 4. This was converted to a scale from 0 to 100, where higher values represented better QOL. The QOL was compared with 50 siblings using student’s t-test. Factors predicting the QOL were assessed. Results: The median age of Rb survivors was 98 (range, 60-247) months and 68% were males. Seventy-nine percent were International Retinoblastoma Staging System (IRSS) stage1 and 25% had bilateral disease. Fourteen percent had extraocular involvement and 22% received radiotherapy. The overall QOL was significantly poorer in Rb survivors as compared to controls (Table). 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. However, the physical health domain including household work, exercise and self-care was similar in both the groups. Age, sex, IRSS stage and previous radiotherapy did not affect the QOL. Conclusions: QOL is often a neglected aspect in survivors of pediatric solid tumors. We found a significantly poorer QOL in Rb survivors. However, no predicting factors for poor QOL were found in this group. Although a high survival rate has been achieved in early stage Rb, efforts need to be made to improve QOL.