Socioeconomic determinants of the quality of life in boys suffering from Duchenne muscular dystrophy & their caregivers.

Background & objectives Duchenne muscular dystrophy (DMD) is the most common childhood-onset muscular dystrophy, severely affecting the quality of life (QoL) of affected children and their caregivers. Socioeconomic status (SES) is directly correlated with QoL of many chronic and life-threatening diseases. This study aimed to understand the socioeconomic determinants of the QoL in boys affected with DMD and their caregivers. Methods The present paper analyses the cross-sectional data of a prospective study involving boys aged 5 to 15 yr with DMD and their caregivers. HrQoL of boys was assessed using EQ 5D-3L tool and PedsQL3.0 Neuromuscular Module, and overall global QoL of caregivers was assessed using World Health Organization Quality of Life-BREF (WHOQOL-BREF). SES was assessed using the OP Agrawal scale. EQ-5D utility index, using adult tariffs, was applied to the Indian paediatric population for the first time. The correlation and association between QoL and SES covariates were analysed with Spearman, linear, stratified analysis, and multiple linear regression. Results A total of 100 families of boys with DMD were enrolled [median age 9 yr (IQR: 7.0-9.0), 91% ambulatory]. HrQoL scores of children as mean (S.D) EQ 5D utility score and PedsQoL for physical health were 0.58±0.38 and 77.7±17.7, respectively. Both were inversely correlated with advancing age and clinical severity of disease. HrQoL of boys has no significant correlation with their socioeconomic status(r=0.04; P=0.708). The average QoL of caregivers was assessed as moderate to good across four domains of WHOQOL-BREF. The environment and social relationship domain of QoL caregivers was positively correlated to EQ 5D utility scores (r=0.22 P=0.028 and r=0.21 P=0.033). QoL of the caregiver's environmental health, social relationship, and psychological health were directly correlated with SES on multiple linear regression after adjusting for socio-demographic and clinical predictors. The quality of physical health of caregivers was independent of any factor. Interpretation & conclusions Overall QoL of children with DMD and primary caregivers was found to below, and the QoL of children is not affected by SES. HrQoL of boys with DMD was inversely associated with the age/ progression of the disease but not with the socioeconomic status of the families. Lower socioeconomic status is inversely associated with the QoL of caregivers. Hence, QoL in boys can be addressed by accessible and effective therapeutic interventions, while tailored interventions and support programmes like patient-centered care that empower lower socioeconomic status can improve the QoL of caregivers.