Social profile and quality of life of families with children with duchenne muscular dystrophy as a basis for improving the organization of medical care.

The social profile and quality of life of families with children with Duchenne muscular dystrophy are important factors for improving the organization of medical and social care for rare disabling diseases. The relevance of the study is determined by the high medical and social significance of Duchenne muscular dystrophy, which is accompanied by severe progressive motor impairment in children and a pronounced impact on all aspects of family life, amid limited domestic data on this issue. Objective: to investigate the social profile of families raising children with Duchenne muscular dystrophy and to assess the quality of life of parents. Materials and methods. A survey of families with children with Duchenne muscular dystrophy was conducted from June to December 2024. Two instruments were used: a self-developed questionnaire to assess the social profile of the family and the validated 36-item Short Form Health Survey to evaluate quality of life. Data were statistically processed using Microsoft Excel and IBM SPSS Statistics version 23. Results. Seventy families participated in the study. Quality of life data were analyzed for 68 respondents. Parents reported moderately reduced scores in emotional well-being, social interaction, cognitive functioning, communication, anxiety, and daily activities. Physical health and family relationships were rated at a satisfactory level. The findings indicate a pronounced psychoemotional and social burden on parents of children with Duchenne muscular dystrophy, independent of the child’s clinical characteristics. Conclusions. The results demonstrate the systemic impact of Duchenne muscular dystrophy on family quality of life, with chronic psycho-emotional stress and social vulnerability among parents. Identified features of the social profile and quality of life should be considered when developing comprehensive medical and social support programs for families. Application of results. The findings can be used in planning specialized medical care, organizing psychological support, developing regional medical and social programs, and improving the care system for children with rare inherited diseases.