To study the perspectives of parents and/or caregivers of boys with Duchenne and Becker Muscular dystrophy (DBMD) on the multidisciplinary team (MDT) clinic visits.

Multidisciplinary care model has been advocated for patients with DBMD to provide comprehensive care. Survival of patients with Duchenne muscular dystrophy (DMD) has improved with the multidisciplinary care.  Studies exploring parents’ and caregivers’ perspectives on multidisciplinary care for patients with DBMD is lacking.

A survey via non-personalized RedCAP link was emailed  to registered parents/caregivers through the The Duchenne Registry provided by Parent Project Muscular Dystrophy (PPMD). The survey contained questions concerning the children’s demographics, medical information, knowledge and perspectives on MDT visits.

A total of 186 parents/caregivers responded to the survey. 83.1% of respondents were white, 9.3% were mixed, 1.6% were African American, and 2.7% selected other (Hispanic, Filipino, and Mexican). 117 of the respondents noted that their children received care from a PPMD Certified Duchenne Care center. The average travel distance to the care site was 228.37 miles. 75% had their visits within 1 day, 19 % had 2 days visit, and 6% had more than 2 days. Majority (89%) of the respondents preferred to have appointments with all of their child’s care providers at once and 89.4% commented that they had enough time with each of the providers. 77% respondents noted that the duration of MDT visits were just right. 20% believed that the visits were too long with some commenting on extended wait times between meeting the individual providers. 86.1% of respondents agreed that they were satisfied with the care received from MDT visits. 81.5% agreed that all the services that they expected were provided at the MDT visit.

Parents and caregivers of patients with DBMD preferred to have MDT visits reinforcing that the community should continue to advocate for the same.