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What Happens to Our Neuromuscular Patients in Adulthood: Pathway to Independence and Maximal Function
Steven E Koop1, M Wade Shrader2
1Department of Orthopaedic Surgery, Gillette Children's Specialty Healthcare, St. Paul, MN.
Insights
Pediatric orthopaedic interventions improve function for children with neuromuscular disorders. However, adult care often lacks the multidisciplinary support needed, highlighting a gap in long-term outcomes research.
Area of Science:
- Pediatric Orthopaedics
- Neuromuscular Disorders
- Musculoskeletal Health
Background:
- Children with neuromuscular disorders require specialized pediatric orthopaedic care.
- These conditions significantly impact childhood development and adult function.
- Long-term outcomes of childhood musculoskeletal interventions are not fully understood.
Purpose of the Study:
- To review the musculoskeletal and functional consequences of common pediatric neuromuscular disorders.
- To evaluate the long-term impact of pediatric orthopaedic interventions.
- To identify gaps in adult healthcare for individuals with childhood-onset neuromuscular conditions.
Main Methods:
- Literature search on cerebral palsy, spina bifida, Duchenne muscular dystrophy, and spinal muscle atrophy.
- Synthesis of findings with author and institutional expertise.
- Expert opinion-based review.
Main Results:
- Neuromuscular conditions can cause deformities impacting physical function.
- Childhood orthopaedic interventions can enhance lifelong function and well-being.
- Transition to adult care often results in fragmented care and unmet needs.
- A lack of long-term outcome studies hinders current pediatric care.
Conclusions:
- Adults with childhood-onset neuromuscular conditions require dedicated healthcare systems.
- These systems should integrate the multidisciplinary approach from pediatric care.
- Pediatric orthopaedic surgeons must advocate for improved adult care systems and learn from adult patients.
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.
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