An Observational Study of Quality of Life in Parents of Patients with Duchenne Muscular Dystrophy in India.

Duchenne muscular dystrophy is a X linked chronic debilitating disease without any definitive treatment requiring high amounts of caregiving. Parents of patients with DMD have to go through a lot of challenges to provide healthcare as well as palliative care once the child becomes non ambulatory. In the due course of the disease, quality of life of parents is affected due to lack of sleep, increased financial burden, increased workload at home, lesser efficacy at work place, lesser personal time, lesser time for social interaction affecting both physical as well as mental health of the parents. Being a X linked disease, DMD also carries social stigma with itself and chances of multiple affected sons at home. Mother being carriers themselves may have muscle weakness on the top of which they have increased work load as well guilt for transcending the gene to the kid. Parents of patients with DMD in spite of all the efforts lose the kid due to lack of treatment severely affecting their mental health. Since quality of life of parents directly affects the caregiving standards in the patient, therefore it is important to study the factors associated with the same.

The study aims to determine Quality of life (QoL) in parents of patients with DMD using WHO BREF Score, compare QoL between mothers and fathers, study factors affecting QoL in parents of patients with DMD and correlate QoL scores with Multidimensional Scale of Perceived Social Support. Study will be conducted at Genetic Clinic and Pediatric outpatient department and wards of the Department of Pediatrics, Seth G.S.M.C and K.E.M. Hospital, Mumbai after approval from ethics committee over a period of 18 months including 75 participants fulfilling inclusion criteria  enrolled after informed consent .The study will establish the nature of QoL of parents in a lifelong genetic disease like DMD. The study will also identify factors that promote good/very good QoL or alternative factors responsible for poor QoL. Results of the study may aid in implementation of measures to improve QoL or augment measures that promote QoL, thus contributing to holistic wellbeing of parents and the patient.