Transition Care for Adolescents and Young Adults with Neuromuscular Disease and Chronic Pulmonary Care Needs

The care of adolescents and young adults with neuromuscular disease and chronic pulmonary care needs is an involved and complex experience for providers, patients, and families. This population is best served by a multidisciplinary team model, if at all possible, including subspecialists, primary care providers, allied health professionals, and social work or care managers. In addition to managing medical complexity, special attention needs to be dedicated to addressing the psychosocial and developmental needs of these patients as they enter adulthood and work to maximize their functional, social, and economic independence. Additionally, issues such as guardianship and aging caregivers need to be addressed for many patients. There are many tools available to help guide patients, families, and providers during this time, including the gottransition.org model and several disease-specific programs. However, there remains a paucity of objective data to guide evidence-based models of care. Providers and programs can and should utilize their strengths to build comprehensive care structures for these transitioning patients, though more evidence is needed to better identify best practices to maximize patient outcomes and satisfaction during this critical phase of their disease experience and life journey. Expanding life expectancy in this patient population is a new and evolving challenge to the healthcare system, offering new opportunities for care optimization and research.