Spina bifida transition to adult healthcare guidelines

Fremion, Ellen; Dosa, Nienke P.

doi:10.3233/prm-190633

Cited by 25 publications

(23 citation statements)

References 56 publications

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“…Indeed, the most frequently endorsed rating for readiness to transition to adult health care was “somewhat.” It is unclear whether providers assessed transition readiness during transition discussions and preparation, as is recommended by the SBA's guidelines for transition. 24 The current findings therefore support assessment, discussion, and support surrounding transition readiness to maximize individuals' comfort and confidence in the transition process.…”

Section: Discussionsupporting

confidence: 60%

The Transition from Pediatric to Adult Health Care in Young Adults with Spina Bifida: Demographic and Physician-Related Correlates

Stiles‐Shields

Kritikos

Starnes

et al. 2021

J Dev Behav Pediatr

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Section: Discussionsupporting

confidence: 60%

The Transition from Pediatric to Adult Health Care in Young Adults with Spina Bifida: Demographic and Physician-Related Correlates

Stiles‐Shields

Kritikos

Starnes

et al. 2021

J Dev Behav Pediatr

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“…Difficulties in transition may also be exacerbated by significant cultural differences between paediatric and adult care services (12,19,20). Paediatric care is developmentally focused, multidisciplinary, and family-centred, where adult care tends to place a greater focus on independence, maturity, and single discipline visits (12,(19)(20)(21). Therefore, it is perhaps unsurprising that many adolescents and adults with SB and their families associate the transition experience with negative feelings (22).…”

Section: Introductionmentioning

confidence: 99%

Health Concerns of Adolescents and Adults With Spina Bifida

2021

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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.

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“…However, the present review suggests that most of the selected studies focused on transition programs for disease management (Lindsay et al., 2016; Sawin et al., 2015; Seeley & Lindeke, 2017) and only one transition program included future aspects, such as health, school, employment, community living, housing, recreation, and leisure (Betz et al., 2010, 2015). AYAs with SB need to develop goals for self‐management related to health care and for potential higher education, employment, and other long‐term plans (Fremion & Dosa, 2019). This is because specific transition problems of AYAs with SB may differ from those of other adolescents with other chronic conditions (Saavedra et al., 2018) due to the challenges experienced during adult healthcare transition.…”

Section: Discussionmentioning

confidence: 99%

Transition programs for adolescents and young adults with spina bifida: A mixed‐methods systematic review

Choi

Bae

Jang

2020

Journal of Advanced Nursing

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Spina bifida (SB) is one of the most common congenital malformations. It is caused by a failed closure of one or more vertebrae during the early weeks of gestation and results in significant neurological impairment at or below the lesion site (Copp et al., 2015). SB is the most complex of the congenital disorders that infants are expected to survive (Phillips et al., 2017); approximately 85% of individuals with SB are expected to survive to adulthood owing to medical advances (Spina Bifida Association, 2018). However, despite the advances in medical care and treatment, patients with SB continue to experience a range of functional impairments in areas such as walking and voluntary bowel and bladder control (Şahiṅ et al., 2014).

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Spina bifida transition to adult healthcare guidelines

Cited by 25 publications

References 56 publications

The Transition from Pediatric to Adult Health Care in Young Adults with Spina Bifida: Demographic and Physician-Related Correlates

The Transition from Pediatric to Adult Health Care in Young Adults with Spina Bifida: Demographic and Physician-Related Correlates

Health Concerns of Adolescents and Adults With Spina Bifida

Transition programs for adolescents and young adults with spina bifida: A mixed‐methods systematic review

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