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

Abstract

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).

An Online-Based Transition Care Program for Adolescents with Spina Bifida Using Intervention Mapping: A Protocol for Program Development

“…To identify the problems related to transition, we conducted a systematic review [25], a need assessment [3], and a discussion with the multidisciplinary panel. First, for conducting a systematic review of transition programs for adolescents with SB [25], we performed a search on PubMed, Web of Science, CINAHL, and PsycINFO databases for studies published from January 2010 to June 2019.…”

“…To identify the problems related to transition, we conducted a systematic review [25], a need assessment [3], and a discussion with the multidisciplinary panel. First, for conducting a systematic review of transition programs for adolescents with SB [25], we performed a search on PubMed, Web of Science, CINAHL, and PsycINFO databases for studies published from January 2010 to June 2019. The search terms were ("adolescent*" or "youth" or "young adult*" or "teen*" or "adolescent" or "young adult") AND ("spina bifida" or "myelomeningocele" or "spinal dysraphism" or "myelomeningocele" or "spinal dysraphism") AND ("transition*" or "transfer*" or "continuity of care" or "continuity of patient care").…”

“…Lastly, the needs and contents of the transition care program were outlined through discussions with the multidisciplinary panel. The results of the systematic review and needs assessment are presented in other articles [3,25].…”

“…Due to the increasing interest in the transition of adolescents with chronic conditions to adulthood, research on the development and evaluation of transition programs for SB has been actively conducted since 2010 [21][22][23][24]. Despite an established consensus about the importance and need for the transition care program for adolescents with SB, clinical evidence for care during this transition remains limited [25]. Transition care programs should support adolescents in their broader transition to adulthood, including personal, social education, and vocational needs, not just their medical needs [26].…”

“…Transition care programs should support adolescents in their broader transition to adulthood, including personal, social education, and vocational needs, not just their medical needs [26]. However, most transition care programs focus on disease management [22,25,26]. Adolescents with SB need to develop goals related to health care and for potential higher educational and vocational plans with other long-term plans [27]; therefore, an integrated transition management program that includes these aspects is needed.…”