ArticleJournal of pediatric rehabilitation medicine2018
The development of a lifetime care model in comprehensive spina bifida care.
Article in Journal of pediatric rehabilitation medicine, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers.
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Who cites it
20 citing papers in PubMed.
- From fortification and foetal surgery to healthy ageing: mentoring leadership through global health partnerships in spina bifida care.BMJ paediatrics open · 2026Review
- The transition from pediatric to adult healthcare in spina bifida: an interview-based measure.Journal of pediatric psychology · 2026Article
- Strategies and Tools to Aid the Transition Between Paediatric and Adult Health Services for Young Adults With Neurodevelopmental Conditions: A Scoping Review.Journal of paediatrics and child health · 2026Article
- Reproductive Education and Sexual Abuse Among Individuals With Spina Bifida: A Mixed Methods Study.Archives of rehabilitation research and clinical translation · 2025Article
- Sleep-related breathing disorders in children with spina bifida.Journal of pediatric rehabilitation medicine · 2024Review
- Development and content validation of a survey assessing domains of sexual and reproductive health in adults with spina bifida.Journal of pediatric rehabilitation medicine · 2024Article
- Evaluation of multidisciplinary high-risk pregnancy clinic for myelomeningocele.Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery · 2024Article
- Transitioning care for adolescents with spina bifida in the US: challenges for management.Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery · 2023Review
- What has changed in pediatric neurosurgical care in spina bifida? A 30-year UAB/Children's of Alabama observational overview.Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery · 2023Article
- Factors affecting the transition to adulthood of Korean young adults with spina bifida: a qualitative study.BMC nursing · 2023Article
- Initial observations of medically complex young adults transitioning to adult care: Revealing data regarding mental health, nutrition, and transition preparedness.Health care transitions · 2023Article
- Impact of Spina Bifida on Sleep Quality: Current Insights.Nature and science of sleep · 2023Review
- 2023 updates to the spina bifida transition to adult care guidelines.Journal of pediatric rehabilitation medicine · 2023Review
- Nontraumatic Spinal Cord Injury: Epidemiology, Etiology and Management.Journal of personalized medicine · 2022Article
- Pediatric Spina Bifida and Spinal Cord Injury.Journal of personalized medicine · 2022Article
- Child, Parent, and Family Adjustment for Patients Followed in a Multidisciplinary Spina Bifida Clinic.Topics in spinal cord injury rehabilitation · 2022Article
- Management of the Transitional Urology Patient: the Role of the Adult Reconstructive Urologist.Current urology reports · 2021Review
- Scope of care in the first four years of life for individuals born with myelomeningocele: A single institution experience1.Journal of pediatric rehabilitation medicine · 2021Article
- Seeking tirelessly for better health and life conditions for the child with myelomeningocele.Revista latino-americana de enfermagem · 2021Article
- Urologic guidelines for the care and management of people with spina bifida.Journal of pediatric rehabilitation medicineReview
Corrections and comments
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Authors and funding
9 authors.
Funding
Abstract
purposeTo describe the development and implementation of the Children's of Alabama (COA) Spina Bifida (SB) Lifetime-Care-Model, including standardized care protocols and transition plan.
methodsIn 2010, members of the pediatric team at COA began to evaluate limitations in access to care for patients with SB at various stages of life. Through clinic surveys, observations, and caregiver report, a Lifetime-Care-Model was developed and implemented. Partnerships were made with adult medicine colleagues to create an interdisciplinary model at each stage. Since developing this program, it has evolved to include standardized care protocols.
resultsSince 2011, there have been 42 prenatal clinics; 114 families received counseling and prenatal care. Of these, 106 have delivered at our center and established care in our pediatric clinic. There are currently 474 patients in the pediatric and 218 in the adult clinics.
conclusionsOur institutional experience suggests that patients with SB benefit from continuity of care throughout their lifetime. This article describes early failures which led to an evolution in approach and implementation of a Lifetime-Care-Model which results in a smooth transition between all phases of life. We hope that other institutions may adapt and build upon it to create programs unique to their specific patient needs.
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