Caregivers perspectives on multidisciplinary clinic visits for Duchenne and Becker muscular dystrophy
Cade Haynie, Ruthwik Duvuru, Chary Akmyradov, Tiffany Boyd, Ellen Wagner, Rachel Schrader, Vikki Stefans, Erin Willis, Aravindhan VeerapandiyanBackground
A multidisciplinary team (MDT) care model has been advocated for patients with Duchenne and Becker Muscular dystrophy (DBMD) to provide comprehensive care. We aimed to study the perspectives of parents and/or caregivers of individuals with DBMD on MDT clinic visits.
Methods
A survey via non-personalized REDCap link was emailed to registered parents/caregivers through the Duchenne Registry provided by Parent Project Muscular Dystrophy (PPMD). The survey contained questions concerning individuals’ demographics, and medical information, as well as knowledge and perspectives on MDT visits. Descriptive and association statistics were utilized.
Results
Of the 186 respondents, 166 cared for individuals with Duchenne and 20 for Becker. 117 of the respondents noted that their children receive care from one of the PPMD Certified Duchenne Care Centers. 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%) preferred to have MDT appointments with all of their care providers at once and 89.4% commented that they had enough time with each of the providers. 77% noted that the duration of MDT visits was just right. 86.1% were satisfied with the care received from MDT visits. Participant comments underscored concerns regarding travel inconveniences, visit duration, standardization of care, and transition of care.
Discussion
Our findings support continued implementation of MDT care and visits for individuals with DBMD, with an emphasis on optimizing visit efficiency and accommodating patients with complex medical needs.