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Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy
Published on: January 12, 2019
Health care utilization and costs for children and adults with duchenne muscular dystrophy
Lucinda J Teoh1, Elizabeth A Geelhoed2, Klair Bayley2
1School of Population Health, The University of Western Australia, Crawley, Western Australia, Australia.
Insights
The economic burden of Duchenne muscular dystrophy (DMD) in Australia is substantial, with annual costs averaging $46,700 per individual. Healthcare expenses represent a significant portion, highlighting the socioeconomic impact of this childhood neuromuscular disorder.
Area of Science:
- Medical Economics
- Neuromuscular Disorders
- Public Health
Background:
- Duchenne muscular dystrophy (DMD) is a severe childhood neuromuscular disorder with significant, yet unquantified, economic implications in Australia.
- Existing healthcare, caregiving, and resource needs suggest a substantial economic burden for families affected by DMD.
Purpose of the Study:
- To assess the specific economic burden of Duchenne muscular dystrophy within Australian households.
- To quantify annual resource utilization and associated costs for individuals with DMD in Australia.
Main Methods:
- A cross-sectional survey was administered to Australian households with a child diagnosed with DMD.
- Data collected included annual resource utilization for healthcare services, equipment, home modifications, informal care, and lost workdays.
Main Results:
- Mean annual healthcare costs reached $10,046 per individual with DMD, exceeding average Australian health expenditures across all age groups.
- The overall mean total economic cost was $46,700 (median $32,300), with healthcare costs comprising 22% of the total burden.
Conclusions:
- Duchenne muscular dystrophy imposes a high annual economic cost, signifying a considerable socioeconomic burden in Australia.
- The economic and caregiving burden is particularly pronounced for males with DMD as they approach adulthood.
Introduction:
Duchenne muscular dystrophy (DMD) is an incurable neuromuscular disorder of childhood. Healthcare, caregiving, and other resource needs of affected individuals are thought to be substantial; however, the economic burden associated with DMD has not yet been assessed specifically in Australia.
Methods:
Australian households with a child with DMD were asked to complete a cross-sectional survey. Data were collected on annual resource utilization including hospital and medical services, equipment, home modifications, informal care, and working days lost.
Results:
Mean healthcare costs were found to be $10,046 Australian dollars per affected individual and were markedly higher than average Australian health expenditures at each age group. The mean total cost was $46,700 (median $32,300), with healthcare costs contributing 22% of total costs.
Conclusions:
The annual economic cost of DMD was found to be high, reflecting a significant socioeconomic burden, especially in boys who reach adulthood, where household resource use and caregiving burden is highest. Muscle Nerve 53: 877-884, 2016.
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