Caregivers perspectives on multidisciplinary clinic visits for Duchenne and Becker muscular dystrophy.
- 1Department of Pediatrics, University of Arkansas for Medical Sciences, Arkansas Children's Hospital, Little Rock, AR, USA.
- 2Arkansas Children's Hospital, Little Rock, AR, USA.
- 3Parent Project Muscular Dystrophy, Washington, DC, USA.
Abstract
BackgroundA 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.MethodsA 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.ResultsOf 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.DiscussionOur 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.
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BibTeX
@article{haynie2026caregivers,
title = {{Caregivers perspectives on multidisciplinary clinic visits for Duchenne and Becker muscular dystrophy.}},
author = {Cade Haynie and Ruthwik Duvuru and Chary Akmyradov and Tiffany Boyd and Ellen Wagner and Rachel Schrader and Vikki Stefans and Erin Willis and Aravindhan Veerapandiyan},
journal = {Journal of neuromuscular diseases},
year = {2026},
month = oct,
doi = {10.1177/22143602261502976},
url = {https://europepmc.org/article/MED/42954137},
note = {CC BY-NC},
}
RIS
TY - JOUR
TI - Caregivers perspectives on multidisciplinary clinic visits for Duchenne and Becker muscular dystrophy.
AU - Cade Haynie
AU - Ruthwik Duvuru
AU - Chary Akmyradov
AU - Tiffany Boyd
AU - Ellen Wagner
AU - Rachel Schrader
AU - Vikki Stefans
AU - Erin Willis
AU - Aravindhan Veerapandiyan
PY - 2026
DA - 2026/10/29
JO - Journal of neuromuscular diseases
DO - 10.1177/22143602261502976
UR - https://europepmc.org/article/MED/42954137
AB - BackgroundA 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.MethodsA 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.ResultsOf 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.DiscussionOur 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.
SN - 2214-3599
SN - 2214-3602
ER -