Education and Employment Among Individuals with Duchenne Muscular Dystrophy: Results from a Caregiver Survey

OBJECTIVES: Duchenne muscular dystrophy is an X-linked neuromuscular disease resulting in progressive muscle weakness that impacts activities of daily living. While the physical and medical impacts of Duchenne are well documented, the extent of the disease on education and employment opportunities has not been thoroughly explored. This study assessed education and employment participation among individuals with Duchenne.

METHODS: Caregivers completed an online survey that gathered information on financial, social, and other aspects influenced by Duchenne, including questions about care recipients’ education and employment participation. Caregivers were required to have provided care to a household member with Duchenne for >12 months and to have incurred a Duchenne-related expense within the past 5 years to accommodate disease progression.

RESULTS: Caregivers (n=90) representing 106 individuals with Duchenne completed the survey. Average patient age was 14.5 years (SD: 5.3); 26 (25%) were ≥18 years. Most (74/106; 70%) were currently enrolled in a school/university at the time of the survey. Seventy-seven percent (57/74) were in a mainstream school/university, 7% (5/74) in a school/university specially equipped to serve students with disabilities, and 16% (12/74) homeschooled. On average, enrolled individuals missed 3.3 school days per month due to their health (range: 0-16; SD: 3.3). Among non-homeschooled individuals in kindergarten through 12th grade, 57% (33/58) relied on a school aide. Reliance on a school aide was highest among individuals who always used a wheelchair or scooter (n=20/25; 80%) compared to those who used a wheelchair or scooter some of the day (n=8/15; 53%) or walked all day (n=5/18; 28%). Among the 26 individuals ≥18 years, 3 (12%) were employed in any capacity.

CONCLUSIONS: This survey provides insights into how progressive muscle weakness, limited mobility, and other symptoms of Duchenne result in reduced hours spent in the classroom and the increased need for a school aide.