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Abstract Details

Caregivers Perspectives on Multidisciplinary Clinic Visits for Duchenne and Becker Muscular Dystrophy
Neuromuscular and Clinical Neurophysiology (EMG)
P5 - Poster Session 5 (11:45 AM-12:45 PM)
10-015

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.

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.

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.

Authors/Disclosures
Cade Michael Haynie
PRESENTER
Mr. Haynie has nothing to disclose.
Aravindhan Veerapandiyan, MD (Arkansas Childrens Hospital/UAMS) Dr. Veerapandiyan has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for AMO Pharma, AveXis, Biogen, Edgewise Therapeutics, FibroGen, Novartis, Pfizer, PTC Therapeutics, Sarepta Therapeutics, Inc., UCB Pharma, Catalyst, Entrada, Scholar Rock, Catalyst, Lupin. Dr. Veerapandiyan has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for MedLink Neurology. The institution of Dr. Veerapandiyan has received research support from AMO Pharma, Capricor Therapeutics, Edgewise Therapeutics, FibroGen, Muscular Dystrophy Association, Novartis, Parent Project Muscular Dystrophy, Pfizer, RegenxBio and Sarepta Therapeutics. Dr. Veerapandiyan has received personal compensation in the range of $5,000-$9,999 for serving as a MD with PPMD, MDA.
Tiffany Boyd, RN Mrs. Boyd has nothing to disclose.
Ellen PPMD (Parent Project Muscular Dystrophy) Ms. PPMD has received personal compensation for serving as an employee of Parent Project Muscular Dystrophy.
Rachel Schrader, NP (Parent Project Musucular Dystrophy) Mrs. Schrader has nothing to disclose.
Ryan Fischer (Parent Project MD) Mr. Fischer has received personal compensation for serving as an employee of Parent Project Muscular Dystrophy.