What Happens to Our Neuromuscular Patients in Adulthood: Pathway to Independence and Maximal Function.

ABSTRACT

BACKGROUND: Children with neuromuscular disorders regularly seek care from pediatric orthopaedic surgeons. These conditions can have a significant impact on the growth and development of children and their function and well-being as adults. Questions exist about the long-term outcomes of musculoskeletal interventions performed during childhood. METHODS: A search of recent literature pertaining to the musculoskeletal and functional consequences of cerebral palsy, spina bifida, Duchenne muscular dystrophy, and spinal muscle atrophy was performed. Information from those articles was combined with the experience of the authors and their institutions. RESULTS: Neuromuscular conditions can result in limb and spine deformities that lead to impaired physical function. Orthopaedic interventions during childhood can improve function and well-being and can be durable into adulthood. Unfortunately, many individuals with these conditions transition to adult health care that lacks the informed, collaborative multidisciplinary care they received as children. This can lead to unmet health care needs and a shortage of long-term natural history and outcome studies that would inform the care of children today. CONCLUSIONS: Adults with childhood-onset neuromuscular conditions need, and deserve, dedicated health care systems that include the best aspects of the care they received as children. Pediatric orthopaedic surgeons have a role in promoting the development of such systems and a responsibility to learn from their adult patients. LEVEL OF EVIDENCE Expert Opinion.