Think back to when you were 16. It may have been a time of excitement, optimism, awkwardness, and questionable style choices. These feelings during adolescence are universal – and are also experienced by young adults with neuromuscular diseases. Like all teenagers, the youth served by MDA have incredible talents, aspirations and promise. They also face some unique challenges.
Keeping these young adults as healthy as possible is a top priority, and research has found that healthcare outcomes are improved when adults are seen by adult clinics (Bent N, Tennant A, et al. Lancet 2002; 360:1280-86). Therefore, at the 2016 Clinical Conference, MDA convened a panel of expert speakers for a session entitled “Best Practices for Transition Care in the Neuromuscular Clinic.” The consensus that emerged from the session was that a successful transition program within a clinic should focuses on three P’s:
1. People-focused: Doctors should always treat the individual as a person, not just a patient. India Peters, a young woman with a neuromuscular condition, made a successful transition into the adult clinic because her pediatric team and adult team met with her to explain why her care was changing and to give her the opportunity to ask questions. People-focused care goes beyond supporting the medical needs of patients. Some clinics, like the MDA Care Center at Lurie Children’s, attend to their young adults’ needs in a holistic manner. For example, they host an annual teen and parent seminar to provide resources related to college, personal care, dating and more. Additionally, at Lurie, a social worker is an integral part of the care team and helps to address the psychosocial needs of adolescents.
2. Process-focused: As more individuals transition from pediatric to adult care, tracking systems that accurately inform clinicians and track progress over time are an essential part of the care process. This is an area of opportunity for many care centers. Dr. Sindhu Ramchandren, from the MDA Care Center at University of Michigan, designed the MTRACK system, which seamlessly integrates information fields in electronic medical records that help Care Center staff identify when an individual is “transition ready” and ensures that important, yet non-medical information, such as self-advocacy skills and health insurance planning is part of a patient’s Electronic Record System.
3. Performance-focused: With challenges such as fewer specialized adult physicians, insurance complications, and more, the purpose of transitioning a patient can get lost in the shuffle. But we know that transitions improve patient care and quality of life. Still, there is no “right answer” related to transition. Clinicians should aim to meet the important care needs for this age group, such as sexual health, whether it is in the pediatric or adult setting.
By focusing on People, Process, and Performance, pediatric and adult care centers alike can provide world-class care to young adults with neuromuscular disease. We need to encourage these teens and set high expectations for their future. After all, it is because of MDA’s investments over the last 50 years that this new cohort of patients is thriving long past expectations of the past. Anyone working with adolescents should remember that they can play a supportive role in a youth’s life. A little encouragement provided during the teen years can help a fourth P emerge: potential.
Alexandra McArthur leads the coordination and execution of the Muscular Dystrophy Association’s transition efforts as the Senior Program Manager, Transitions. This national initiative works to remove barriers and empower youth with disabilities to lead self-directed, contributing, and fulfilled lives.
