DMD & BMD – CLINICAL: P.43 Patient and family centric care for Duchenne and Becker muscular dystrophy: towards the IPU (Integrated Practice Unit) model

Abstract

Patients with Duchenne and Becker muscular dystrophy (DBMD) have multisystem care needs for motor, cardiac, pulmonary, neurobehavioral health problems and bone and endocrine co-morbidities from glucocorticoid therapy. Carrier moms and sisters are at risk for cardiomyopathy. The Duchenne program at University of Massachusetts Medical School was established to overcome the coordination challenges of function-based specialist care groups. Lack of an integrated care management framework results in fragmented care and suboptimal outcomes. Our IPU care model for DBMD is centered on a coordinated, team-based, integrated approach that spans the full cycle of care and features a core team with the full range of medical expertise and technical skills needed to address all the care needs of patients and carriers with DBMD. The team is led by a neuromuscular physician who functions as the team captain to oversee the care process. Other elements of the DBMD IPU care model include: team meetings to oversee care processes and coordinate patients' care plans; responsibility for the full cycle of care for the multi-systemic health problems from infancy to adulthood by pediatric and adult providers – encompassing outpatient, inpatient and rehabilitative care, and allied health care needs, patient and family education via program website and patient portals with EHR, phone calls and emails for post visit follow up care, care coordination with primary and local care providers for DBMD specific care considerations; tracked outcomes (clinical outcomes with PROM and EHR based program registry, financial outcomes with costs and revenue); and a single administrative and scheduling structure with a dedicated clinic business plan. A primary challenge to establishing an IPU is cost of staff efforts, due to current insurance approaches to reimbursement. Cost effectiveness and budget impact studies are needed to assess the potential for value or outcome-based financing for IPU models of care.