Transitions From Pediatric to Adult Neuromuscular Care: A Practical Guide

As many as 90% of individuals with childhood onset diseases now live into adulthood. Due to this increase in lifespan, many, such as those with childhood onset neuromuscular disorders (NMDs), need health care transition to adult primary and specialty care providers. Despite growing recognition of the need for transition, only 17% of youth with special healthcare needs are receiving assistance with health care transition. One primary model of transition is the six core elements of transition as defined by the National Alliance to Advance Adolescent Health in their "Got Transition" which serves as a primary framework for other models of care. Growing evidence suggests continued barriers to the transition process, including difficulty finding adult specialists, lack of sufficient communication between pediatric and adult transition care providers, insurance issues, and lack of family/patient engagement in the process. Additionally, there are characteristics of the care team members (patient, family, pediatric and adult healthcare providers) themselves that serve as either positive or negative predictors of the success of transition, such as patient level of disability, family knowledge of the disease process, education level, adherence to treatment, investment in transitioning care, and provider recognition of limits of their own scope of practice. Use of tools to assess patient and family readiness to begin the transition process, optimization of the electronic medical record (EMR) to share information, telehealth, and dedicated transition clinics are key factors in making this process smoother for both patients and healthcare providers.