Article ; Online: Transitioning care for adolescents with spina bifida in the US: challenges for management.
2023 Volume 39, Issue 11, Page(s) 3123–3130
Abstract: Open spina bifida (OSB) is a common neural tube defect. Medical and surgical care involves addressing the baseline orthopedic, urologic, and neurological dysfunction as well as the changes or declines that may occur as the patient ages. Given the ... ...
Abstract | Open spina bifida (OSB) is a common neural tube defect. Medical and surgical care involves addressing the baseline orthopedic, urologic, and neurological dysfunction as well as the changes or declines that may occur as the patient ages. Given the complexity of this disease, coordinated, multidisciplinary care involving specialists in neurosurgery, orthopedics, urology, rehabilitation and physical medicine, pediatrics, and psychology is necessary to establish and optimize baseline function. Traditionally in the US, pediatric multispecialty spina bifida clinics have provided the patient with a coordinated medical support system. Unfortunately, this coordinated, medical home has been difficult to establish during the transition from pediatric to adult care. Medical professionals must have a strong understanding of OSB to properly manage the disease and detect and prevent associated complications. In this manuscript, we (1) describe the changing needs and challenges of people living with OSB over a lifespan, (2) delineate current practices in the transition of care for people with OSB from childhood to adulthood, and (3) provide recommendations for best practices in navigating the transition process for clinicians who provide care for those afflicted with this most complex congenital abnormality of the nervous system compatible with long term survival. |
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MeSH term(s) | Adult ; Humans ; Adolescent ; Child ; Young Adult ; Folic Acid ; Transition to Adult Care ; Anencephaly/prevention & control ; Food, Fortified ; Spinal Dysraphism/therapy ; Spina Bifida Cystica |
Chemical Substances | Folic Acid (935E97BOY8) |
Language | English |
Publishing date | 2023-04-26 |
Publishing country | Germany |
Document type | Journal Article ; Review |
ZDB-ID | 605988-0 |
ISSN | 1433-0350 ; 0302-2803 ; 0256-7040 |
ISSN (online) | 1433-0350 |
ISSN | 0302-2803 ; 0256-7040 |
DOI | 10.1007/s00381-023-05955-8 |
Database | MEDical Literature Analysis and Retrieval System OnLINE |
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