Health related quality of life of patients treated with bilateral enucleation for retinoblastoma.

Abstract

Bilateral enucleation is rarely used to manage retinoblastoma (Rb). We present the health-related quality of life (HQL) and the associated factors among individuals who underwent bilateral surgical enucleation for retinoblastoma. Patients were interviewed via telephone in January 2020. A retinoblastoma registry was used to select patients who underwent bilateral enucleation/exenteration during 33 years. Data included age, gender, literacy, occupation, marital status, and health issues. Patients were asked eight questions on HQL. The responses were graded as 0-10. The percentage proportion of the HQL score was correlated to the determinants. Twenty-one out of 24 participants were interviewed (median age, 23 years). Fourteen participants answered the HQL question themselves, and for 7, their parents answered. Twenty patients (95%) had an ocular prosthesis. The median HQL score was 58 (out of a maximum score of 80) (interquartile range (IQR): 49; 70; minimum, 0 and maximum, 74). The HQL score was positively correlated to: self-reporting than parents reporting (Mann Whitney U (MW) p = 0.05); among students versus individuals in other occupations (MW p = 0.03); interval between eye removal and interview (p = 0.02). Age at enucleation of the second eye (p = 0.001), students (p < 0.001), and self-responders (p < 0.001) were independent predictors of a high HQL score. HQL of individuals having bilateral eye enucleation for retinoblastoma was reasonably good and positively correlated to self-reporting, learning as students to cope and age at 2nd eye removal. Anaplasty services to improve cosmetics seem to benefit such disabled persons.