Health Concerns of Adolescents and Adults With Spina Bifida

Due to advancements in medical care, people with spina bifida (SB) are surviving well into adulthood, resulting in a growing number of patients transitioning to an adult sector unequipped to care for people with chronic rehabilitative and medical needs. The Transitional and Lifelong Care (TLC) progr...

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Autores principales:	Jessica Starowicz, Caitlin Cassidy, Laura Brunton
Formato:	article
Lenguaje:	EN
Publicado:	Frontiers Media S.A. 2021
Materias:	spina bifida (SB) health concerns healthcare transition adolescents adults multidisciplinary health care Neurology. Diseases of the nervous system RC346-429
Acceso en línea:	https://doaj.org/article/1480cede498843ea957b82bed3857672
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spelling	oai:doaj.org-article:1480cede498843ea957b82bed38576722021-11-12T06:26:16ZHealth Concerns of Adolescents and Adults With Spina Bifida1664-229510.3389/fneur.2021.745814https://doaj.org/article/1480cede498843ea957b82bed38576722021-11-01T00:00:00Zhttps://www.frontiersin.org/articles/10.3389/fneur.2021.745814/fullhttps://doaj.org/toc/1664-2295Due to advancements in medical care, people with spina bifida (SB) are surviving well into adulthood, resulting in a growing number of patients transitioning to an adult sector unequipped to care for people with chronic rehabilitative and medical needs. The Transitional and Lifelong Care (TLC) program is a multidisciplinary clinical service that compensates for this gap, providing comprehensive, coordinated care to adolescents, and adults with SB. As a relatively new clinical service, objective data about the patients using the service and their needs is scant. This study sought to identify the most common health concerns among TLC patients with SB at initial clinical consultation. A retrospective chart review of 94 patient charts was performed. Following data extraction, descriptive analyses were completed. The mean age of the sample was 29.04 ± 13.8 years. One hundred individual concerns and 18 concern categories were identified. On average, patients or care providers identified nine health concerns across various spheres of care, with care coordination being the most prevalent concern identified (86%). Patients also commonly had concerns regarding neurogenic bladder (70%), medications (66%), assistive devices (48%), and neurogenic bowel (42%). The numerous and wide-ranging health concerns identified support the need for individualised, coordinated care and a “medical home” for all adolescents and adults with SB during and following the transition to adult care. Health care providers caring for this population should continue to address well-documented health concerns and also consider raising discussion around topics such as sexual health, mental health, and bone health. Further research is required to understand how best to address the complex medical issues faced by adults with SB to maximise health and quality of life and improve access to healthcare.Jessica StarowiczCaitlin CassidyLaura BruntonFrontiers Media S.A.articlespina bifida (SB)health concernshealthcare transitionadolescentsadultsmultidisciplinary health careNeurology. Diseases of the nervous systemRC346-429ENFrontiers in Neurology, Vol 12 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	spina bifida (SB) health concerns healthcare transition adolescents adults multidisciplinary health care Neurology. Diseases of the nervous system RC346-429
spellingShingle	spina bifida (SB) health concerns healthcare transition adolescents adults multidisciplinary health care Neurology. Diseases of the nervous system RC346-429 Jessica Starowicz Caitlin Cassidy Laura Brunton Health Concerns of Adolescents and Adults With Spina Bifida
description	Due to advancements in medical care, people with spina bifida (SB) are surviving well into adulthood, resulting in a growing number of patients transitioning to an adult sector unequipped to care for people with chronic rehabilitative and medical needs. The Transitional and Lifelong Care (TLC) program is a multidisciplinary clinical service that compensates for this gap, providing comprehensive, coordinated care to adolescents, and adults with SB. As a relatively new clinical service, objective data about the patients using the service and their needs is scant. This study sought to identify the most common health concerns among TLC patients with SB at initial clinical consultation. A retrospective chart review of 94 patient charts was performed. Following data extraction, descriptive analyses were completed. The mean age of the sample was 29.04 ± 13.8 years. One hundred individual concerns and 18 concern categories were identified. On average, patients or care providers identified nine health concerns across various spheres of care, with care coordination being the most prevalent concern identified (86%). Patients also commonly had concerns regarding neurogenic bladder (70%), medications (66%), assistive devices (48%), and neurogenic bowel (42%). The numerous and wide-ranging health concerns identified support the need for individualised, coordinated care and a “medical home” for all adolescents and adults with SB during and following the transition to adult care. Health care providers caring for this population should continue to address well-documented health concerns and also consider raising discussion around topics such as sexual health, mental health, and bone health. Further research is required to understand how best to address the complex medical issues faced by adults with SB to maximise health and quality of life and improve access to healthcare.
format	article
author	Jessica Starowicz Caitlin Cassidy Laura Brunton
author_facet	Jessica Starowicz Caitlin Cassidy Laura Brunton
author_sort	Jessica Starowicz
title	Health Concerns of Adolescents and Adults With Spina Bifida
title_short	Health Concerns of Adolescents and Adults With Spina Bifida
title_full	Health Concerns of Adolescents and Adults With Spina Bifida
title_fullStr	Health Concerns of Adolescents and Adults With Spina Bifida
title_full_unstemmed	Health Concerns of Adolescents and Adults With Spina Bifida
title_sort	health concerns of adolescents and adults with spina bifida
publisher	Frontiers Media S.A.
publishDate	2021
url	https://doaj.org/article/1480cede498843ea957b82bed3857672
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Health Concerns of Adolescents and Adults With Spina Bifida

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