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

Abstract

OBJECTIVES/GOALS: This study surveyed parents and/or caregivers of children with Duchenne and Becker muscular dystrophy (DBMD) to obtain their perspectives on experiences during multidisciplinary team (MDT) clinic visits. The goal was to improve DBMD care by identifying positive and negative aspects of the visits. METHODS/STUDY POPULATION: Multidisciplinary care models have been widely used in many disciplines, as they provide excellent opportunities for patient-centered care (PCC). Survival of patients with Duchenne muscular dystrophy (DMD) has improved with multidisciplinary care. As the model continues to evolve, additional services and disciplines are added, and exploring parents’ and caregivers’ perspectives on multidisciplinary care for patients with DBMD must be assessed. A survey, via a non-identifiable Redcap link, was emailed to registered parents/caregivers through 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/ANTICIPATED RESULTS: A total of 186 parents/caregivers of DMBD patients responded to the survey. Respondents were white (83.1%), bi/multi-racial (9.3%), African American (1.6%), and other (2.7%). The average travel distance to the care site was 228.37 miles. Most respondents (75%) had their visits within one day, but 25% had visits over ≥2 days. 89.0% of respondents preferred a single MDT meeting with their child’s care providers; 89.4% indicated they had enough time with each provider, 86.1% were satisfied with the MDT care, and 81% said they received enough information prior to the visit. Scheduling difficulties were rare for MDT visits, but common when arranging care with providers not included in the MDTs. DISCUSSION/SIGNIFICANCE: MDT clinic visits enable patients to see multiple caregivers in a single visit. Our study suggests that parents and caregivers of DBMD patients prefer to have MDT visits and are satisfied with the care. This information will support the DBMD community as they continue to advocate for MDT visits.