Investigating the Quality of Life of Retinoblastoma Survivors: An Initial Exploration
Author(s): Krishnasri Padamandala, Santosh G Honavar, Rolika Bansal, Surya Durga Prasad M, Padmaja Gadiraju, Geeta K Vemuganti
Background: The purpose of this study was to assess the viability of using the quality-of-life questionnaire and structured interview in South Indian tertiary eye care hospital survivors, age-matched controls, and their parents.
Procedure: 15 RB survivors, 15 age-matched controls, and 30 primary carers were included. Peds QL 4.0 generic core scale and structured interview were administered. Physical, social, emotional, and school health were also examined.
Results: Cases and controls had a mean age of 5.9 years, SD + 2.4, based on 60 samples. The questionnaire was completed by children in 15.1 + 0.4 minutes, whereas it took controls in 12.2 + 0.6 minutes. RB survivors (15/15) and controls (3/15) of all ages and genders need parental help to complete the questionnaire. The physical health of RB survivors was 0.3 SD +0.96, the social health was 0.32 SD +1.0, the emotional health was 0.56 SD +1.06, and the school health was 1.6 SD +2.1. Physical health was 0.3 SD +0.7, social health 0.06 SD +0.1, emotional health 0.2 SD +0.5, and school health 0.2 SD +0.4. The P-value for the two-tailed t-test is 95% CI, P0.05.
Conclusion: The pilot research showed that participants, especially parents, understood and accepted the quality of life measuring instrument (Peds QL 4.0), making it suitable for a larger study. This age group needed parents and researchers. The tendency suggests a reduction in survivors' quality of life, emphasizing the necessity for psychoeducation and counseling before and after treatment.