Health-related quality of life of parents of children with beta-thalassemia major attending a tertiary care institution in Eastern India

Abstract

Context: Chronic diseases such as beta-thalassemia major among children impact their parents in various ways, as they face continuous stress and strain while striving to provide their children with a best possible care. Literature related to health-related quality of life (HRQoL) among parents of children with beta-thalassemia major are limited among Indian population. Aims: This study aimed to assess the HRQoL of parents of children with beta-thalassemia major attending a tertiary care institution in Eastern India and its various correlates. Settings and Design: This cross-sectional study was conducted at a tertiary care institution in Eastern India. Materials and Methods: A sample size of 192 was selected using the simple random sampling among parents with children suffering from beta-thalassemia major who fulfilled the inclusion criteria. Study participants were interviewed regarding different variables and their HRQoL, using a predesigned, pretested, and semi-structured schedule and the Short Form 36 Health survey, respectively, after obtaining ethical clearance from the Institutional Ethics Committee and informed consent from them. Statistical Analysis Used: Data were entered in MS Excel and analyzed using IBM SPSS 20.0 version (Armonk, NY: IBM Corp). Results: The mean HRQoL score was found to be 38.7 ± 11.3 with an interquartile range of 23–59.7. The Spearman's rho correlation matrix showed that HRQol of parents is weakly positively correlated with the educational status of the father of the child (r = 0.2), educational status of the mother of the child (r = 0.1), family history of thalassemia (r = 0.2), ongoing treatment (r = 0.1), and duration of blood transfusion (r = 0.2). Conclusions: Hence, we can conclude that HRQoL of parents of beta-thalassemia major children was correlated with the educational status of the father and mother, family history of thalassemia, ongoing treatment, and duration of blood transfusion.