Caregivers Perspectives on Multidisciplinary Clinic Visits for Duchenne and Becker Muscular Dystrophy


Clinical Management

Poster Number: 22


Aravindhan Veerapandiyan, MD, University of Arkansas for Medical Sciences, Arkansas Children's Hospital, Cade Haynie, University of Arkansas for Medical Sciences / Arkansas Children's Hospital, Tiffany Roby, Arkansas Children's Hospital, Ellen Wagner, Parent Project Muscular Dystrophy, Rachel Schrader, Parent Project Muscular Dystrophy, Ryan Fischer, Parent Project Muscular Dystrophy

Background: A multidisciplinary care model has been advocated for patients with Duchenne and Becker Muscular dystrophy (DBMD) to provide comprehensive care. Studies exploring parents’ and caregivers’ perspectives on multidisciplinary care for patients with DBMD is lacking.
Aim: To study the perspectives of parents and/or caregivers of people with DBMD on the multidisciplinary team (MDT) clinic visits.
Methods: 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.
Results: A total of 186 parents/caregivers responded to the survey, 89% of them were caring for patients with DMD. 83.1% of respondents were white, 9.3% were multiracial, 1.6% were African American, and 2.7% selected other. 63% of the respondents noted that their children receive care from one of the PPMD Certified Duchenne Care centers. The average travel distance to the care site was 228.37 miles. The majority of respondents used a personal vehicle for travel. 75% had their visits within one day, 19 % had their visit over 2 days, and 6% had more than two 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, however, 20% believed that the visits were too long, 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% of the respondents agreed that all the services that they expected their child to have were provided at the visit. Majority noted that that there was little to no difficulty arranging appointments for MDT visits, but difficulties were noted in arranging care with providers not included in their MDT. 81% of respondents agreed that they received enough information prior to the visit and 82.8% agreed that they understood how the visit would be conducted beforehand.
Conclusion: Parents and caregivers of patients with DBMD preferred to have MDT visits reinforcing that the community should continue to advocate for the model.
More data will be presented at the conference.