Assessment OF Health-Related Quality OF Life USING A SELF-MADE OUTCOME MEASURE IN Duchenne Muscular Dystrophy Patients

Abstract

Research Question: Is this questionnaire covering all the components to be assessed, time saving and cost effective?

Design: Observational

Participants: 56 Duchenne Muscular Dystrophy Children (aged 6-18 years)

Outcome Measure: Self-made outcome measure consisting general, mental, social and physical component.

Results: Only 1.8% of participants in this survey had higher scores for general health satisfaction, whereas the majority (51.8%) expressed moderate discontent. On the other hand, mental health outcomes were very stable, with 73.2% of children scoring between 51 and 75, indicating consistent psychological well-being. This was especially true for younger children (6–10 years old), who demonstrated more coping resilience as a result of assistance from their families and schools. Equal numbers of participants (46.4%) reported moderate to somewhat higher results for social health, however only 7.1% achieved high scores. With a 69.7% score over 51, physical health was the strongest area, indicating that continued medical care and physical therapy were crucial for preserving functional capacity.

Conclusion: The quality of life is moderate for kids with Duchenne Muscular Dystrophy. Physical health has the biggest beneficial contribution, while general health is most impacted. To enhance general well-being, a multidisciplinary strategy incorporating social interaction, psychological support, and physical therapy is necessary.