Transitioning care for adolescents with spina bifida in the US: challenges for management.
Childs Nerv Syst
; 39(11): 3123-3130, 2023 11.
Article
em En
| MEDLINE
| ID: mdl-37099139
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.
Palavras-chave
Texto completo:
1
Bases de dados:
MEDLINE
Assunto principal:
Espinha Bífida Cística
/
Disrafismo Espinal
/
Transição para Assistência do Adulto
/
Anencefalia
Tipo de estudo:
Guideline
Limite:
Adolescent
/
Adult
/
Child
/
Humans
Idioma:
En
Revista:
Childs Nerv Syst
Assunto da revista:
NEUROLOGIA
/
PEDIATRIA
Ano de publicação:
2023
Tipo de documento:
Article
País de afiliação:
Estados Unidos