{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,21]],"date-time":"2026-08-21T16:03:50Z","timestamp":1787328230095,"version":"build-2736575974"},"reference-count":104,"publisher":"Journal of Neurosurgery Publishing Group (JNSPG)","issue":"2","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2024,8,1]]},"abstract":"<jats:sec>\n                    <jats:title>OBJECTIVE<\/jats:title>\n                    <jats:p>Patients with spina bifida (SB) were historically followed by pediatric providers throughout their entire lives. Through medical and surgical advancements, now more pediatric SB patients are living well into adulthood. Nonetheless, many patients fail to successfully transition to appropriate adult healthcare providers. The goal of this study was to identify factors that helped facilitate or hinder the successful transition of adolescent and young adult (AYA) SB patients to adult providers.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>METHODS<\/jats:title>\n                    <jats:p>A systematic review was conducted exploring the transition care of SB patients using the PubMed, Embase, and Scopus databases. Titles and abstracts from articles identified were read and selected for full-text review. Studies meeting the inclusion criteria were reviewed in full and analyzed for study design, populations, interventions, and factors influencing transition.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>RESULTS<\/jats:title>\n                    <jats:p>The primary search identified 2050 articles, of which 20 were included in the final review. Thirteen studies discussed factors relating to neurosurgical care, 8 referenced gastrointestinal and genitourinary considerations, 11 examined cognitive and psychosocial factors, and 17 explored healthcare system factors. Several barriers were consistently reported regarding communication, patient and parental attitudes and perceptions, and failure to embrace formalized and transparent protocols. Conflicting results were reported regarding the influence medical comorbidities had on a patient\u2019s ability to transition.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>CONCLUSIONS<\/jats:title>\n                    <jats:p>The process of transitioning AYA SB patients to adult care is complex, involving an interplay of structural and psychosocial factors. The findings in this review suggest that some barriers can be alleviated with improved education, planning, and awareness of factors that influence transition care.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.3171\/2024.5.focus24234","type":"journal-article","created":{"date-parts":[[2024,8,1]],"date-time":"2024-08-01T07:47:23Z","timestamp":1722498443000},"page":"E3","source":"Crossref","is-referenced-by-count":8,"title":["Barriers to healthcare transition for spina bifida patients: a systematic review"],"prefix":"10.3171","volume":"57","author":[{"given":"Reid","family":"Colliander","sequence":"first","affiliation":[{"name":"Chicago Medical School, Rosalind Franklin University, North Chicago;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dayna C.","family":"Sloane","sequence":"additional","affiliation":[{"name":"Department of Neurological Surgery, Loyola University Medical Center\/Stritch School of Medicine, Maywood;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joshua E.","family":"Simon","sequence":"additional","affiliation":[{"name":"Department of Neurological Surgery, Loyola University Medical Center\/Stritch School of Medicine, Maywood;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nathan A.","family":"Shlobin","sequence":"additional","affiliation":[{"name":"Department of Neurological Surgery, Northwestern University Feinberg School of Medicine, Chicago; and"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sandi","family":"Lam","sequence":"additional","affiliation":[{"name":"Department of Neurological Surgery, Northwestern University Feinberg School of Medicine, Chicago; and"},{"name":"Division of Pediatric Neurosurgery, Ann & Robert H. Lurie Children\u2019s Hospital of Chicago, Illinois"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robin","family":"Bowman","sequence":"additional","affiliation":[{"name":"Department of Neurological Surgery, Northwestern University Feinberg School of Medicine, Chicago; and"},{"name":"Division of Pediatric Neurosurgery, Ann & Robert H. Lurie Children\u2019s Hospital of Chicago, Illinois"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1754","reference":[{"key":"b1","series-title":"Nat Rev Dis Primers","first-page":"15007","article-title":"Spina bifida","volume":"1","author":"Copp AJ","year":"2015","unstructured":"Copp AJ, Adzick NS, Chitty LS, Fletcher JM, Holmbeck GN, Shaw GM. Spina bifida. Nat Rev Dis Primers. 2015;1:15007."},{"issue":"9","key":"b2","series-title":"Childs Nerv Syst","first-page":"1675","article-title":"Multidisciplinary spina bifida clinic: the Chicago experience","volume":"38","author":"Shlobin NA","year":"2022","unstructured":"Shlobin NA, Yerkes EB, Swaroop VT, Lam S, McLone DG, Bowman RM. Multidisciplinary spina bifida clinic: the Chicago experience. Childs Nerv Syst. 2022;38(9):1675\u20131681."},{"key":"b3","series-title":"March of Dimes Birth Defects Foundation;","article-title":"March of Dimes: Global Report on Birth Defects: The Hidden Toll of Dying and Disabled Children","author":"Christianson A","year":"2006","unstructured":"Christianson A, Howson C, Modell B. March of Dimes: Global Report on Birth Defects: The Hidden Toll of Dying and Disabled Children. March of Dimes Birth Defects Foundation; 2006.Accessed June 10, 2024.https:\/\/www.prevencioncongenitas.org\/wp-content\/uploads\/2017\/02\/Global-report-on-birth-defects-The-hidden-toll-of-dying-and-disabled-children-Full-report.pdf"},{"issue":"7852","key":"b4","series-title":"Lancet","first-page":"301","article-title":"Effect of early surgery for spina bifida cystica on survival and quality of life","volume":"1","author":"Laurence KM","year":"1974","unstructured":"Laurence KM. Effect of early surgery for spina bifida cystica on survival and quality of life. Lancet. 1974;1(7852):301\u2013304."},{"issue":"3","key":"b5","series-title":"Pediatr Neurosurg","first-page":"114","article-title":"Spina bifida outcome: a 25-year prospective","volume":"34","author":"Bowman RM","year":"2001","unstructured":"Bowman RM, McLone DG, Grant JA, Tomita T, Ito JA. Spina bifida outcome: a 25-year prospective. Pediatr Neurosurg. 2001;34(3):114\u2013120."},{"issue":"4","key":"b6","series-title":"Pediatr Neurosurg","first-page":"186","article-title":"Long-term survival of individuals with myelomeningocele","volume":"41","author":"Davis BE","year":"2005","unstructured":"Davis BE, Daley CM, Shurtleff DB,  Long-term survival of individuals with myelomeningocele. Pediatr Neurosurg. 2005;41(4):186\u2013191."},{"issue":"4","key":"b7","series-title":"J Pediatr Rehabil Med","first-page":"405","article-title":"Transition Readiness Assessment Questionnaire Spina Bifida (TRAQ-SB) specific module and its association with clinical outcomes among youth and young adults with spina bifida","volume":"12","author":"Wood D","year":"2019","unstructured":"Wood D, Rocque B, Hopson B, Barnes K, Johnson KR. Transition Readiness Assessment Questionnaire Spina Bifida (TRAQ-SB) specific module and its association with clinical outcomes among youth and young adults with spina bifida. J Pediatr Rehabil Med. 2019;12(4):405\u2013413."},{"issue":"4","key":"b8","series-title":"J Pediatr Rehabil Med","first-page":"311","article-title":"The development of the Adolescent\/Young Adult Self-Management and Independence Scale II: psychometric data","volume":"11","author":"Sawin KJ","year":"2018","unstructured":"Sawin KJ, Heffelfinger A, Cashin SE, Brei TJ. The development of the Adolescent\/Young Adult Self-Management and Independence Scale II: psychometric data. J Pediatr Rehabil Med. 2018;11(4):311\u2013322."},{"key":"b9","article-title":"Guidelines for the Care of People with Spina Bifida: Transition","author":"Fremion E","year":"2023","unstructured":"Fremion E, Bevans S, Kaufman M,  Guidelines for the Care of People with Spina Bifida: Transition. Spina Bifida Association;2023.Accessed June 10, 2024.https:\/\/www.spinabifidaassociation.org\/resource\/transition\/"},{"issue":"5","key":"b10","series-title":"Pediatrics","first-page":"e20182587","article-title":"Supporting the health care transition from adolescence to adulthood in the medical home","volume":"142","author":"White PH","year":"2018","unstructured":"White PH, Cooley WC. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2018;142(5):e20182587."},{"key":"b11","series-title":"J Pediatr Nurs","first-page":"318","article-title":"Discrepancies in educational needs for transition in adolescents and young adults with spina bifida in South Korea: use of the Borich Needs Assessment Model","volume":"61","author":"Choi EK","year":"2021","unstructured":"Choi EK, Bae E, Ji Y, Jung E, Yang SH. Discrepancies in educational needs for transition in adolescents and young adults with spina bifida in South Korea: use of the Borich Needs Assessment Model. J Pediatr Nurs. 2021;61:318\u2013324."},{"issue":"3","key":"b12","series-title":"J Dev Behav Pediatr","first-page":"e179","article-title":"The transition from pediatric to adult health care in young adults with spina bifida: demographic and physician-related correlates","volume":"43","author":"Stiles-Shields C","year":"2022","unstructured":"Stiles-Shields C, Kritikos TK, Starnes M, Smith ZR, Holmbeck GN. The transition from pediatric to adult health care in young adults with spina bifida: demographic and physician-related correlates. J Dev Behav Pediatr. 2022;43(3):e179\u2013e187."},{"issue":"1","key":"b13","series-title":"Pediatr Neurosurg","first-page":"36","article-title":"Disbanding a multidisciplinary clinic: effects on the health care of myelomeningocele patients","volume":"21","author":"Kaufman BA","year":"1994","unstructured":"Kaufman BA, Terbrock A, Winters N, Ito J, Klosterman A, Park TS. Disbanding a multidisciplinary clinic: effects on the health care of myelomeningocele patients. Pediatr Neurosurg. 1994;21(1):36\u201344."},{"issue":"160","key":"b14","series-title":"BMJ","first-page":"n160","article-title":"PRISMA 2020 explanation and elaboration: updated guidance and exemplars for reporting systematic reviews","volume":"372","author":"Page MJ","year":"2021","unstructured":"Page MJ, Moher D, Bossuyt PM,  PRISMA 2020 explanation and elaboration: updated guidance and exemplars for reporting systematic reviews. BMJ. 2021;372(160):n160."},{"key":"b15","article-title":"World Bank Country and Lending Groups. The World Bank","unstructured":"World Bank Country and Lending Groups. The World Bank. Accessed June 10, 2024.https:\/\/datahelpdesk.worldbank.org\/knowledgebase\/articles\/906519-world-bank-country-and-lending-groups"},{"issue":"7650","key":"b16","series-title":"BMJ","first-page":"924","article-title":"GRADE: an emerging consensus on rating quality of evidence and strength of recommendations","volume":"336","author":"Guyatt GH","year":"2008","unstructured":"Guyatt GH, Oxman AD, Vist GE,  GRADE: an emerging consensus on rating quality of evidence and strength of recommendations. BMJ. 2008;336(7650):924\u2013926."},{"key":"b17","series-title":"BMJ","first-page":"i4919","article-title":"ROBINS-I: a tool for assessing risk of bias in non-randomised studies of interventions","volume":"355","author":"Sterne JA","year":"2016","unstructured":"Sterne JA, Hern\u00e1n MA, Reeves BC,  ROBINS-I: a tool for assessing risk of bias in non-randomised studies of interventions. BMJ. 2016;355:i4919."},{"issue":"4","key":"b18","series-title":"J Urol","first-page":"1050","article-title":"Ambulatory care use among patients with spina bifida: change in care from childhood to adulthood","volume":"199","author":"Shepard CL","year":"2018","unstructured":"Shepard CL, Doerge EJ, Eickmeyer AB, Kraft KH, Wan J, Stoffel JT. Ambulatory care use among patients with spina bifida: change in care from childhood to adulthood. J Urol. 2018;199(4):1050\u20131055."},{"key":"b19","series-title":"Front Neurol","first-page":"745814","article-title":"Health concerns of adolescents and adults with spina bifida","volume":"12","author":"Starowicz J","year":"2021","unstructured":"Starowicz J, Cassidy C, Brunton L. Health concerns of adolescents and adults with spina bifida. Front Neurol. 2021;12:745814."},{"issue":"4","key":"b20","series-title":"Urology","first-page":"959","article-title":"Transition of urologic patients from pediatric to adult care: a preliminary assessment of readiness in spina bifida patients","volume":"85","author":"Stephany HA","year":"2015","unstructured":"Stephany HA, Ching CB, Kaufman MR,  Transition of urologic patients from pediatric to adult care: a preliminary assessment of readiness in spina bifida patients. Urology. 2015;85(4):959\u2013963."},{"issue":"1","key":"b21","series-title":"J Pediatr Urol","first-page":"40.e1","article-title":"How successful is the transition to adult urology care in spina bifida? A single center 7-year experience","volume":"13","author":"Szymanski KM","year":"2017","unstructured":"Szymanski KM, Cain MP, Hardacker TJ, Misseri R. How successful is the transition to adult urology care in spina bifida? A single center 7-year experience. J Pediatr Urol. 2017;13(1):40.e1\u201340.e6."},{"issue":"2","key":"b22","series-title":"J Neurosurg Pediatr","first-page":"203","article-title":"Young adults with spina bifida transitioned to a medical home: a survey of medical care in Jacksonville, Florida","volume":"17","author":"Aguilera AM","year":"2016","unstructured":"Aguilera AM, Wood DL, Keeley C, James HE, Aldana PR. Young adults with spina bifida transitioned to a medical home: a survey of medical care in Jacksonville, Florida. J Neurosurg Pediatr. 2016;17(2):203\u2013207."},{"issue":"4 suppl","key":"b23","series-title":"J Urol","first-page":"1590","article-title":"Transition of care to an adult spina bifida clinic: patient perspectives and medical outcomes","volume":"186","author":"Cox A","year":"2011","unstructured":"Cox A, Breau L, Connor L, McNeely PD, Anderson PA, MacLellan DL. Transition of care to an adult spina bifida clinic: patient perspectives and medical outcomes. J Urol. 2011;186(4 suppl):1590\u20131594."},{"issue":"6","key":"b24","series-title":"Dev Med Child Neurol","first-page":"821","article-title":"Education and employment as young adults living with spina bifida transition to adulthood in the USA: a study of the National Spina Bifida Patient Registry","volume":"65","author":"Liu T","year":"2023","unstructured":"Liu T, Ouyang L, Walker WO,  Education and employment as young adults living with spina bifida transition to adulthood in the USA: a study of the National Spina Bifida Patient Registry. Dev Med Child Neurol. 2023;65(6):821\u2013830."},{"issue":"9","key":"b25","series-title":"JAMA Netw Open","first-page":"e2127034","article-title":"Assessment of health literacy and self-reported readiness for transition to adult care among adolescents and young adults with spina bifida","volume":"4","author":"Rague JT","year":"2021","unstructured":"Rague JT, Kim S, Hirsch JA,  Assessment of health literacy and self-reported readiness for transition to adult care among adolescents and young adults with spina bifida. JAMA Netw Open. 2021;4(9):e2127034."},{"issue":"1","key":"b26","series-title":"J Pediatr Urol","first-page":"45.e1","article-title":"Factors impacting transition readiness in young adults with neuropathic bladder","volume":"16","author":"Roth JD","year":"2020","unstructured":"Roth JD, Szymanski KM, Cain MP, Misseri R. Factors impacting transition readiness in young adults with neuropathic bladder. J Pediatr Urol. 2020;16(1):45.e1\u201345.e7."},{"issue":"4","key":"b27","series-title":"J Pediatr Urol","first-page":"384.e1","article-title":"Transitioning young adults with neurogenic bladder\u2014are providers asking too much?","volume":"15","author":"Roth JD","year":"2019","unstructured":"Roth JD, Szymanski KM, Ferguson EJ, Cain MP, Misseri R. Transitioning young adults with neurogenic bladder\u2014are providers asking too much? J Pediatr Urol. 2019;15(4):384.e1\u2013384.e6."},{"issue":"4","key":"b28","series-title":"J Pediatr Neurol","first-page":"211","article-title":"Strategic directions for transition to adulthood for patients with spina bifida","volume":"11","author":"Berry JG","year":"2013","unstructured":"Berry JG, Kusminsky M, Foley SM,  Strategic directions for transition to adulthood for patients with spina bifida. J Pediatr Neurol. 2013;11(4):211\u2013220."},{"issue":"4","key":"b29","series-title":"Disabil Health J","first-page":"101508","article-title":"The impact of a health care transition clinic on spina bifida condition management and transition planning","volume":"16","author":"Manohar S","year":"2023","unstructured":"Manohar S, Staggers KA, Huang X, Castillo J, Castillo H, Fremion E. The impact of a health care transition clinic on spina bifida condition management and transition planning. Disabil Health J. 2023;16(4):101508."},{"issue":"3-4","key":"b30","series-title":"J Pediatr Rehabil Med","first-page":"275","article-title":"Evaluation of spina bifida transitional care practices in the United States","volume":"10","author":"Kelly MS","year":"2017","unstructured":"Kelly MS, Thibadeau J, Struwe S, Ramen L, Ouyang L, Routh J. Evaluation of spina bifida transitional care practices in the United States. J Pediatr Rehabil Med. 2017;10(3-4):275\u2013281."},{"issue":"4","key":"b31","series-title":"Rev Int Androl","first-page":"259","article-title":"Assessment of sexual life in spina bifida patients: a survey among pediatric urologists","volume":"19","author":"Motta GL","year":"2021","unstructured":"Motta GL, Bujons A, Quir\u00f3z Y, Llorens E, Rosito TE. Assessment of sexual life in spina bifida patients: a survey among pediatric urologists. Rev Int Androl. 2021;19(4):259\u2013263."},{"issue":"1-2 suppl","key":"b32","series-title":"Can Urol Assoc J","first-page":"S88","article-title":"The transition process of spina bifida patients to adult-centred care: an assessment of the Canadian urology landscape","volume":"11","author":"Wajchendler A","year":"2017","unstructured":"Wajchendler A, Anderson P, Koyle MA. The transition process of spina bifida patients to adult-centred care: an assessment of the Canadian urology landscape. Can Urol Assoc J. 2017;11(1-2 suppl):S88\u2013S91."},{"issue":"6","key":"b33","series-title":"J Pediatr Urol","first-page":"535.e1","article-title":"Lost in transition: patient-identified barriers to adult urological spina bifida care","volume":"14","author":"Hettel D","year":"2018","unstructured":"Hettel D, Tran C, Szymanski K, Misseri R, Wood H. Lost in transition: patient-identified barriers to adult urological spina bifida care. J Pediatr Urol. 2018;14(6):535.e1\u2013535.e4."},{"issue":"4","key":"b34","series-title":"Scott Med J","first-page":"209","article-title":"Transition into adult healthcare services in Scotland: findings from a study concerning service users at the Scottish Spina Bifida Association","volume":"59","author":"Levy S","year":"2014","unstructured":"Levy S, Wynd AH, Carachi R. Transition into adult healthcare services in Scotland: findings from a study concerning service users at the Scottish Spina Bifida Association. Scott Med J. 2014;59(4):209\u2013213."},{"issue":"5","key":"b35","series-title":"Acad Pediatr","first-page":"858","article-title":"Adolescents and young adults with spina bifida transitioning to adulthood: a comprehensive community-based needs assessment","volume":"21","author":"Jenkins AM","year":"2021","unstructured":"Jenkins AM, Burns D, Horick R, Spicer B, Vaughn LM, Woodward J. Adolescents and young adults with spina bifida transitioning to adulthood: a comprehensive community-based needs assessment. Acad Pediatr. 2021;21(5):858\u2013867."},{"issue":"2","key":"b36","series-title":"Top Spinal Cord Inj Rehabil","first-page":"155","article-title":"Care for adults with spina bifida: current state and future directions","volume":"23","author":"Mukherjee S","year":"2017","unstructured":"Mukherjee S, Pasulka J. Care for adults with spina bifida: current state and future directions. Top Spinal Cord Inj Rehabil. 2017;23(2):155\u2013167."},{"issue":"4","key":"b37","series-title":"J Pediatr Urol","first-page":"258.e1","article-title":"Barriers to transition in young adults with neurogenic bladder","volume":"12","author":"Grimsby GM","year":"2016","unstructured":"Grimsby GM, Burgess R, Culver S, Schlomer BJ, Jacobs MA. Barriers to transition in young adults with neurogenic bladder. J Pediatr Urol. 2016;12(4):258.e1\u2013258.e5."},{"issue":"6","key":"b38","series-title":"Pediatrics","first-page":"1090","article-title":"Current status of transition preparation among youth with special needs in the United States","volume":"131","author":"McManus MA","year":"2013","unstructured":"McManus MA, Pollack LR, Cooley WC,  Current status of transition preparation among youth with special needs in the United States. Pediatrics. 2013;131(6):1090\u20131097."},{"issue":"4","key":"b39","series-title":"J Pediatr Rehabil Med","first-page":"631","article-title":"Factors associated with self-management independence and quality of life for adolescents and young adults with spina bifida engaged in a guideline-based transition clinic","volume":"14","author":"Fremion E","year":"2021","unstructured":"Fremion E, Madey R, Staggers KA,  Factors associated with self-management independence and quality of life for adolescents and young adults with spina bifida engaged in a guideline-based transition clinic. J Pediatr Rehabil Med. 2021;14(4):631\u2013641."},{"issue":"1","key":"b40","series-title":"Health Aff (Millwood)","first-page":"165","article-title":"The Affordable Care Act has led to significant gains in health insurance and access to care for young adults","volume":"32","author":"Sommers BD","year":"2013","unstructured":"Sommers BD, Buchmueller T, Decker SL, Carey C, Kronick R. The Affordable Care Act has led to significant gains in health insurance and access to care for young adults. Health Aff (Millwood). 2013;32(1):165\u2013174."},{"issue":"6","key":"b41","series-title":"Can Urol Assoc J","first-page":"191","article-title":"Healthcare utilization during transition to adult care in patients with spina bifida: a population-based, longitudinal study in Ontario, Canada","volume":"17","author":"Matta R","year":"2023","unstructured":"Matta R, Wallis CJD, Etches J,  Healthcare utilization during transition to adult care in patients with spina bifida: a population-based, longitudinal study in Ontario, Canada. Can Urol Assoc J. 2023;17(6):191\u2013198."},{"issue":"1","key":"b42","series-title":"BMC Nurs","first-page":"46","article-title":"Factors affecting the transition to adulthood of Korean young adults with spina bifida: a qualitative study","volume":"22","author":"Choi EK","year":"2023","unstructured":"Choi EK, Park J, Kim K,  Factors affecting the transition to adulthood of Korean young adults with spina bifida: a qualitative study. BMC Nurs. 2023;22(1):46."},{"issue":"4","key":"b43","series-title":"J Wound Ostomy Continence Nurs","first-page":"321","article-title":"Bladder self-management in the transition to adulthood with spina bifida in 3 countries: a comparative study","volume":"46","author":"Faleiros F","year":"2019","unstructured":"Faleiros F, Warschausky S, K\u00e4ppler C,  Bladder self-management in the transition to adulthood with spina bifida in 3 countries: a comparative study. J Wound Ostomy Continence Nurs. 2019;46(4):321\u2013326."},{"issue":"3","key":"b44","series-title":"J Adolesc Health","first-page":"345","article-title":"Views of young people with chronic conditions on transition from pediatric to adult health services","volume":"59","author":"Hislop J","year":"2016","unstructured":"Hislop J, Mason H, Parr JR, Vale L, Colver A. Views of young people with chronic conditions on transition from pediatric to adult health services. J Adolesc Health. 2016;59(3):345\u2013353."},{"issue":"11","key":"b45","series-title":"Disabil Rehabil","first-page":"921","article-title":"Restrictions in social participation of young adults with spina bifida","volume":"31","author":"Barf HA","year":"2009","unstructured":"Barf HA, Post MW, Verhoef M, Jennekens-Schinkel A, Gooskens RH, Prevo AJ. Restrictions in social participation of young adults with spina bifida. Disabil Rehabil. 2009;31(11):921\u2013927."},{"issue":"7","key":"b46","series-title":"Dev Med Child Neurol","first-page":"647","article-title":"Interrelationships of sex, level of lesion, and transition outcomes among young adults with myelomeningocele","volume":"53","author":"Bellin MH","year":"2011","unstructured":"Bellin MH, Dicianno BE, Levey E,  Interrelationships of sex, level of lesion, and transition outcomes among young adults with myelomeningocele. Dev Med Child Neurol. 2011;53(7):647\u2013652."},{"issue":"5","key":"b47","series-title":"J Paediatr Child Health","first-page":"414","article-title":"Young people with spina bifida: transfer from paediatric to adult health care","volume":"34","author":"Sawyer SM","year":"1998","unstructured":"Sawyer SM, Collins N, Bryan D, Brown D, Hope MA, Bowes G. Young people with spina bifida: transfer from paediatric to adult health care. J Paediatr Child Health. 1998;34(5):414\u2013417."},{"issue":"4","key":"b48","series-title":"J Pediatr Health Care","first-page":"323","article-title":"Movin\u2019 On Up: an innovative nurse-led interdisciplinary health care transition program","volume":"30","author":"Betz CL","year":"2016","unstructured":"Betz CL, Smith KA, Van Speybroeck A, Hernandez FV, Jacobs RA. Movin\u2019 On Up: an innovative nurse-led interdisciplinary health care transition program. J Pediatr Health Care. 2016;30(4):323\u2013338."},{"key":"b49","series-title":"J Pediatr Nurs","first-page":"44","article-title":"Nurse-led eHealth transition care program for adolescents with spina bifida: a feasibility and acceptability study","volume":"67","author":"Choi EK","year":"2022","unstructured":"Choi EK, Bae E, Yun H. Nurse-led eHealth transition care program for adolescents with spina bifida: a feasibility and acceptability study. J Pediatr Nurs. 2022;67:44\u201351."},{"issue":"2","key":"b50","series-title":"Rehabil Nurs","first-page":"63","article-title":"Transitioning adolescents and young adults with a chronic health condition to adult healthcare - an exemplar program","volume":"38","author":"Kaufmann Rauen K","year":"2013","unstructured":"Kaufmann Rauen K, Sawin KJ, Bartelt T, Waring WP III, Orr M, Corey O\u2019Connor R. Transitioning adolescents and young adults with a chronic health condition to adult healthcare - an exemplar program. Rehabil Nurs. 2013;38(2):63\u201372."},{"issue":"4","key":"b51","series-title":"J Pediatr Rehabil Med","first-page":"323","article-title":"The development of a lifetime care model in comprehensive spina bifida care","volume":"11","author":"Hopson B","year":"2018","unstructured":"Hopson B, Rocque BG, Joseph DB,  The development of a lifetime care model in comprehensive spina bifida care. J Pediatr Rehabil Med. 2018;11(4):323\u2013334."},{"issue":"11","key":"b52","series-title":"N Engl J Med","first-page":"993","article-title":"A randomized trial of prenatal versus postnatal repair of myelomeningocele","volume":"364","author":"Adzick NS","year":"2011","unstructured":"Adzick NS, Thom EA, Spong CY,  A randomized trial of prenatal versus postnatal repair of myelomeningocele. N Engl J Med. 2011;364(11):993\u20131004."},{"key":"b1","series-title":"Nat Rev Dis Primers","first-page":"15007","article-title":"Spina bifida","volume":"1","author":"Copp AJ","year":"2015","unstructured":"Copp AJ, Adzick NS, Chitty LS, Fletcher JM, Holmbeck GN, Shaw GM. Spina bifida. Nat Rev Dis Primers. 2015;1:15007."},{"issue":"9","key":"b2","series-title":"Childs Nerv Syst","first-page":"1675","article-title":"Multidisciplinary spina bifida clinic: the Chicago experience","volume":"38","author":"Shlobin NA","year":"2022","unstructured":"Shlobin NA, Yerkes EB, Swaroop VT, Lam S, McLone DG, Bowman RM. Multidisciplinary spina bifida clinic: the Chicago experience. Childs Nerv Syst. 2022;38(9):1675\u20131681."},{"key":"b3","series-title":"March of Dimes Birth Defects Foundation;","article-title":"March of Dimes: Global Report on Birth Defects: The Hidden Toll of Dying and Disabled Children","author":"Christianson A","year":"2006","unstructured":"Christianson A, Howson C, Modell B. March of Dimes: Global Report on Birth Defects: The Hidden Toll of Dying and Disabled Children. March of Dimes Birth Defects Foundation; 2006.Accessed June 10, 2024.https:\/\/www.prevencioncongenitas.org\/wp-content\/uploads\/2017\/02\/Global-report-on-birth-defects-The-hidden-toll-of-dying-and-disabled-children-Full-report.pdf"},{"issue":"7852","key":"b4","series-title":"Lancet","first-page":"301","article-title":"Effect of early surgery for spina bifida cystica on survival and quality of life","volume":"1","author":"Laurence KM","year":"1974","unstructured":"Laurence KM. Effect of early surgery for spina bifida cystica on survival and quality of life. Lancet. 1974;1(7852):301\u2013304."},{"issue":"3","key":"b5","series-title":"Pediatr Neurosurg","first-page":"114","article-title":"Spina bifida outcome: a 25-year prospective","volume":"34","author":"Bowman RM","year":"2001","unstructured":"Bowman RM, McLone DG, Grant JA, Tomita T, Ito JA. Spina bifida outcome: a 25-year prospective. Pediatr Neurosurg. 2001;34(3):114\u2013120."},{"issue":"4","key":"b6","series-title":"Pediatr Neurosurg","first-page":"186","article-title":"Long-term survival of individuals with myelomeningocele","volume":"41","author":"Davis BE","year":"2005","unstructured":"Davis BE, Daley CM, Shurtleff DB,  Long-term survival of individuals with myelomeningocele. Pediatr Neurosurg. 2005;41(4):186\u2013191."},{"issue":"4","key":"b7","series-title":"J Pediatr Rehabil Med","first-page":"405","article-title":"Transition Readiness Assessment Questionnaire Spina Bifida (TRAQ-SB) specific module and its association with clinical outcomes among youth and young adults with spina bifida","volume":"12","author":"Wood D","year":"2019","unstructured":"Wood D, Rocque B, Hopson B, Barnes K, Johnson KR. Transition Readiness Assessment Questionnaire Spina Bifida (TRAQ-SB) specific module and its association with clinical outcomes among youth and young adults with spina bifida. J Pediatr Rehabil Med. 2019;12(4):405\u2013413."},{"issue":"4","key":"b8","series-title":"J Pediatr Rehabil Med","first-page":"311","article-title":"The development of the Adolescent\/Young Adult Self-Management and Independence Scale II: psychometric data","volume":"11","author":"Sawin KJ","year":"2018","unstructured":"Sawin KJ, Heffelfinger A, Cashin SE, Brei TJ. The development of the Adolescent\/Young Adult Self-Management and Independence Scale II: psychometric data. J Pediatr Rehabil Med. 2018;11(4):311\u2013322."},{"key":"b9","article-title":"Guidelines for the Care of People with Spina Bifida: Transition","author":"Fremion E","year":"2023","unstructured":"Fremion E, Bevans S, Kaufman M,  Guidelines for the Care of People with Spina Bifida: Transition. Spina Bifida Association;2023.Accessed June 10, 2024.https:\/\/www.spinabifidaassociation.org\/resource\/transition\/"},{"issue":"5","key":"b10","series-title":"Pediatrics","first-page":"e20182587","article-title":"Supporting the health care transition from adolescence to adulthood in the medical home","volume":"142","author":"White PH","year":"2018","unstructured":"White PH, Cooley WC. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2018;142(5):e20182587."},{"key":"b11","series-title":"J Pediatr Nurs","first-page":"318","article-title":"Discrepancies in educational needs for transition in adolescents and young adults with spina bifida in South Korea: use of the Borich Needs Assessment Model","volume":"61","author":"Choi EK","year":"2021","unstructured":"Choi EK, Bae E, Ji Y, Jung E, Yang SH. Discrepancies in educational needs for transition in adolescents and young adults with spina bifida in South Korea: use of the Borich Needs Assessment Model. J Pediatr Nurs. 2021;61:318\u2013324."},{"issue":"3","key":"b12","series-title":"J Dev Behav Pediatr","first-page":"e179","article-title":"The transition from pediatric to adult health care in young adults with spina bifida: demographic and physician-related correlates","volume":"43","author":"Stiles-Shields C","year":"2022","unstructured":"Stiles-Shields C, Kritikos TK, Starnes M, Smith ZR, Holmbeck GN. The transition from pediatric to adult health care in young adults with spina bifida: demographic and physician-related correlates. J Dev Behav Pediatr. 2022;43(3):e179\u2013e187."},{"issue":"1","key":"b13","series-title":"Pediatr Neurosurg","first-page":"36","article-title":"Disbanding a multidisciplinary clinic: effects on the health care of myelomeningocele patients","volume":"21","author":"Kaufman BA","year":"1994","unstructured":"Kaufman BA, Terbrock A, Winters N, Ito J, Klosterman A, Park TS. Disbanding a multidisciplinary clinic: effects on the health care of myelomeningocele patients. Pediatr Neurosurg. 1994;21(1):36\u201344."},{"issue":"160","key":"b14","series-title":"BMJ","first-page":"n160","article-title":"PRISMA 2020 explanation and elaboration: updated guidance and exemplars for reporting systematic reviews","volume":"372","author":"Page MJ","year":"2021","unstructured":"Page MJ, Moher D, Bossuyt PM,  PRISMA 2020 explanation and elaboration: updated guidance and exemplars for reporting systematic reviews. BMJ. 2021;372(160):n160."},{"key":"b15","article-title":"World Bank Country and Lending Groups. The World Bank","unstructured":"World Bank Country and Lending Groups. The World Bank. Accessed June 10, 2024.https:\/\/datahelpdesk.worldbank.org\/knowledgebase\/articles\/906519-world-bank-country-and-lending-groups"},{"issue":"7650","key":"b16","series-title":"BMJ","first-page":"924","article-title":"GRADE: an emerging consensus on rating quality of evidence and strength of recommendations","volume":"336","author":"Guyatt GH","year":"2008","unstructured":"Guyatt GH, Oxman AD, Vist GE,  GRADE: an emerging consensus on rating quality of evidence and strength of recommendations. BMJ. 2008;336(7650):924\u2013926."},{"key":"b17","series-title":"BMJ","first-page":"i4919","article-title":"ROBINS-I: a tool for assessing risk of bias in non-randomised studies of interventions","volume":"355","author":"Sterne JA","year":"2016","unstructured":"Sterne JA, Hern\u00e1n MA, Reeves BC,  ROBINS-I: a tool for assessing risk of bias in non-randomised studies of interventions. BMJ. 2016;355:i4919."},{"issue":"4","key":"b18","series-title":"J Urol","first-page":"1050","article-title":"Ambulatory care use among patients with spina bifida: change in care from childhood to adulthood","volume":"199","author":"Shepard CL","year":"2018","unstructured":"Shepard CL, Doerge EJ, Eickmeyer AB, Kraft KH, Wan J, Stoffel JT. Ambulatory care use among patients with spina bifida: change in care from childhood to adulthood. J Urol. 2018;199(4):1050\u20131055."},{"key":"b19","series-title":"Front Neurol","first-page":"745814","article-title":"Health concerns of adolescents and adults with spina bifida","volume":"12","author":"Starowicz J","year":"2021","unstructured":"Starowicz J, Cassidy C, Brunton L. Health concerns of adolescents and adults with spina bifida. Front Neurol. 2021;12:745814."},{"issue":"4","key":"b20","series-title":"Urology","first-page":"959","article-title":"Transition of urologic patients from pediatric to adult care: a preliminary assessment of readiness in spina bifida patients","volume":"85","author":"Stephany HA","year":"2015","unstructured":"Stephany HA, Ching CB, Kaufman MR,  Transition of urologic patients from pediatric to adult care: a preliminary assessment of readiness in spina bifida patients. Urology. 2015;85(4):959\u2013963."},{"issue":"1","key":"b21","series-title":"J Pediatr Urol","first-page":"40.e1","article-title":"How successful is the transition to adult urology care in spina bifida? A single center 7-year experience","volume":"13","author":"Szymanski KM","year":"2017","unstructured":"Szymanski KM, Cain MP, Hardacker TJ, Misseri R. How successful is the transition to adult urology care in spina bifida? A single center 7-year experience. J Pediatr Urol. 2017;13(1):40.e1\u201340.e6."},{"issue":"2","key":"b22","series-title":"J Neurosurg Pediatr","first-page":"203","article-title":"Young adults with spina bifida transitioned to a medical home: a survey of medical care in Jacksonville, Florida","volume":"17","author":"Aguilera AM","year":"2016","unstructured":"Aguilera AM, Wood DL, Keeley C, James HE, Aldana PR. Young adults with spina bifida transitioned to a medical home: a survey of medical care in Jacksonville, Florida. J Neurosurg Pediatr. 2016;17(2):203\u2013207."},{"issue":"4 suppl","key":"b23","series-title":"J Urol","first-page":"1590","article-title":"Transition of care to an adult spina bifida clinic: patient perspectives and medical outcomes","volume":"186","author":"Cox A","year":"2011","unstructured":"Cox A, Breau L, Connor L, McNeely PD, Anderson PA, MacLellan DL. Transition of care to an adult spina bifida clinic: patient perspectives and medical outcomes. J Urol. 2011;186(4 suppl):1590\u20131594."},{"issue":"6","key":"b24","series-title":"Dev Med Child Neurol","first-page":"821","article-title":"Education and employment as young adults living with spina bifida transition to adulthood in the USA: a study of the National Spina Bifida Patient Registry","volume":"65","author":"Liu T","year":"2023","unstructured":"Liu T, Ouyang L, Walker WO,  Education and employment as young adults living with spina bifida transition to adulthood in the USA: a study of the National Spina Bifida Patient Registry. Dev Med Child Neurol. 2023;65(6):821\u2013830."},{"issue":"9","key":"b25","series-title":"JAMA Netw Open","first-page":"e2127034","article-title":"Assessment of health literacy and self-reported readiness for transition to adult care among adolescents and young adults with spina bifida","volume":"4","author":"Rague JT","year":"2021","unstructured":"Rague JT, Kim S, Hirsch JA,  Assessment of health literacy and self-reported readiness for transition to adult care among adolescents and young adults with spina bifida. JAMA Netw Open. 2021;4(9):e2127034."},{"issue":"1","key":"b26","series-title":"J Pediatr Urol","first-page":"45.e1","article-title":"Factors impacting transition readiness in young adults with neuropathic bladder","volume":"16","author":"Roth JD","year":"2020","unstructured":"Roth JD, Szymanski KM, Cain MP, Misseri R. Factors impacting transition readiness in young adults with neuropathic bladder. J Pediatr Urol. 2020;16(1):45.e1\u201345.e7."},{"issue":"4","key":"b27","series-title":"J Pediatr Urol","first-page":"384.e1","article-title":"Transitioning young adults with neurogenic bladder\u2014are providers asking too much?","volume":"15","author":"Roth JD","year":"2019","unstructured":"Roth JD, Szymanski KM, Ferguson EJ, Cain MP, Misseri R. Transitioning young adults with neurogenic bladder\u2014are providers asking too much? J Pediatr Urol. 2019;15(4):384.e1\u2013384.e6."},{"issue":"4","key":"b28","series-title":"J Pediatr Neurol","first-page":"211","article-title":"Strategic directions for transition to adulthood for patients with spina bifida","volume":"11","author":"Berry JG","year":"2013","unstructured":"Berry JG, Kusminsky M, Foley SM,  Strategic directions for transition to adulthood for patients with spina bifida. J Pediatr Neurol. 2013;11(4):211\u2013220."},{"issue":"4","key":"b29","series-title":"Disabil Health J","first-page":"101508","article-title":"The impact of a health care transition clinic on spina bifida condition management and transition planning","volume":"16","author":"Manohar S","year":"2023","unstructured":"Manohar S, Staggers KA, Huang X, Castillo J, Castillo H, Fremion E. The impact of a health care transition clinic on spina bifida condition management and transition planning. Disabil Health J. 2023;16(4):101508."},{"issue":"3-4","key":"b30","series-title":"J Pediatr Rehabil Med","first-page":"275","article-title":"Evaluation of spina bifida transitional care practices in the United States","volume":"10","author":"Kelly MS","year":"2017","unstructured":"Kelly MS, Thibadeau J, Struwe S, Ramen L, Ouyang L, Routh J. Evaluation of spina bifida transitional care practices in the United States. J Pediatr Rehabil Med. 2017;10(3-4):275\u2013281."},{"issue":"4","key":"b31","series-title":"Rev Int Androl","first-page":"259","article-title":"Assessment of sexual life in spina bifida patients: a survey among pediatric urologists","volume":"19","author":"Motta GL","year":"2021","unstructured":"Motta GL, Bujons A, Quir\u00f3z Y, Llorens E, Rosito TE. Assessment of sexual life in spina bifida patients: a survey among pediatric urologists. Rev Int Androl. 2021;19(4):259\u2013263."},{"issue":"1-2 suppl","key":"b32","series-title":"Can Urol Assoc J","first-page":"S88","article-title":"The transition process of spina bifida patients to adult-centred care: an assessment of the Canadian urology landscape","volume":"11","author":"Wajchendler A","year":"2017","unstructured":"Wajchendler A, Anderson P, Koyle MA. The transition process of spina bifida patients to adult-centred care: an assessment of the Canadian urology landscape. Can Urol Assoc J. 2017;11(1-2 suppl):S88\u2013S91."},{"issue":"6","key":"b33","series-title":"J Pediatr Urol","first-page":"535.e1","article-title":"Lost in transition: patient-identified barriers to adult urological spina bifida care","volume":"14","author":"Hettel D","year":"2018","unstructured":"Hettel D, Tran C, Szymanski K, Misseri R, Wood H. Lost in transition: patient-identified barriers to adult urological spina bifida care. J Pediatr Urol. 2018;14(6):535.e1\u2013535.e4."},{"issue":"4","key":"b34","series-title":"Scott Med J","first-page":"209","article-title":"Transition into adult healthcare services in Scotland: findings from a study concerning service users at the Scottish Spina Bifida Association","volume":"59","author":"Levy S","year":"2014","unstructured":"Levy S, Wynd AH, Carachi R. Transition into adult healthcare services in Scotland: findings from a study concerning service users at the Scottish Spina Bifida Association. Scott Med J. 2014;59(4):209\u2013213."},{"issue":"5","key":"b35","series-title":"Acad Pediatr","first-page":"858","article-title":"Adolescents and young adults with spina bifida transitioning to adulthood: a comprehensive community-based needs assessment","volume":"21","author":"Jenkins AM","year":"2021","unstructured":"Jenkins AM, Burns D, Horick R, Spicer B, Vaughn LM, Woodward J. Adolescents and young adults with spina bifida transitioning to adulthood: a comprehensive community-based needs assessment. Acad Pediatr. 2021;21(5):858\u2013867."},{"issue":"2","key":"b36","series-title":"Top Spinal Cord Inj Rehabil","first-page":"155","article-title":"Care for adults with spina bifida: current state and future directions","volume":"23","author":"Mukherjee S","year":"2017","unstructured":"Mukherjee S, Pasulka J. Care for adults with spina bifida: current state and future directions. Top Spinal Cord Inj Rehabil. 2017;23(2):155\u2013167."},{"issue":"4","key":"b37","series-title":"J Pediatr Urol","first-page":"258.e1","article-title":"Barriers to transition in young adults with neurogenic bladder","volume":"12","author":"Grimsby GM","year":"2016","unstructured":"Grimsby GM, Burgess R, Culver S, Schlomer BJ, Jacobs MA. Barriers to transition in young adults with neurogenic bladder. J Pediatr Urol. 2016;12(4):258.e1\u2013258.e5."},{"issue":"6","key":"b38","series-title":"Pediatrics","first-page":"1090","article-title":"Current status of transition preparation among youth with special needs in the United States","volume":"131","author":"McManus MA","year":"2013","unstructured":"McManus MA, Pollack LR, Cooley WC,  Current status of transition preparation among youth with special needs in the United States. Pediatrics. 2013;131(6):1090\u20131097."},{"issue":"4","key":"b39","series-title":"J Pediatr Rehabil Med","first-page":"631","article-title":"Factors associated with self-management independence and quality of life for adolescents and young adults with spina bifida engaged in a guideline-based transition clinic","volume":"14","author":"Fremion E","year":"2021","unstructured":"Fremion E, Madey R, Staggers KA,  Factors associated with self-management independence and quality of life for adolescents and young adults with spina bifida engaged in a guideline-based transition clinic. J Pediatr Rehabil Med. 2021;14(4):631\u2013641."},{"issue":"1","key":"b40","series-title":"Health Aff (Millwood)","first-page":"165","article-title":"The Affordable Care Act has led to significant gains in health insurance and access to care for young adults","volume":"32","author":"Sommers BD","year":"2013","unstructured":"Sommers BD, Buchmueller T, Decker SL, Carey C, Kronick R. The Affordable Care Act has led to significant gains in health insurance and access to care for young adults. Health Aff (Millwood). 2013;32(1):165\u2013174."},{"issue":"6","key":"b41","series-title":"Can Urol Assoc J","first-page":"191","article-title":"Healthcare utilization during transition to adult care in patients with spina bifida: a population-based, longitudinal study in Ontario, Canada","volume":"17","author":"Matta R","year":"2023","unstructured":"Matta R, Wallis CJD, Etches J,  Healthcare utilization during transition to adult care in patients with spina bifida: a population-based, longitudinal study in Ontario, Canada. Can Urol Assoc J. 2023;17(6):191\u2013198."},{"issue":"1","key":"b42","series-title":"BMC Nurs","first-page":"46","article-title":"Factors affecting the transition to adulthood of Korean young adults with spina bifida: a qualitative study","volume":"22","author":"Choi EK","year":"2023","unstructured":"Choi EK, Park J, Kim K,  Factors affecting the transition to adulthood of Korean young adults with spina bifida: a qualitative study. BMC Nurs. 2023;22(1):46."},{"issue":"4","key":"b43","series-title":"J Wound Ostomy Continence Nurs","first-page":"321","article-title":"Bladder self-management in the transition to adulthood with spina bifida in 3 countries: a comparative study","volume":"46","author":"Faleiros F","year":"2019","unstructured":"Faleiros F, Warschausky S, K\u00e4ppler C,  Bladder self-management in the transition to adulthood with spina bifida in 3 countries: a comparative study. J Wound Ostomy Continence Nurs. 2019;46(4):321\u2013326."},{"issue":"3","key":"b44","series-title":"J Adolesc Health","first-page":"345","article-title":"Views of young people with chronic conditions on transition from pediatric to adult health services","volume":"59","author":"Hislop J","year":"2016","unstructured":"Hislop J, Mason H, Parr JR, Vale L, Colver A. Views of young people with chronic conditions on transition from pediatric to adult health services. J Adolesc Health. 2016;59(3):345\u2013353."},{"issue":"11","key":"b45","series-title":"Disabil Rehabil","first-page":"921","article-title":"Restrictions in social participation of young adults with spina bifida","volume":"31","author":"Barf HA","year":"2009","unstructured":"Barf HA, Post MW, Verhoef M, Jennekens-Schinkel A, Gooskens RH, Prevo AJ. Restrictions in social participation of young adults with spina bifida. Disabil Rehabil. 2009;31(11):921\u2013927."},{"issue":"7","key":"b46","series-title":"Dev Med Child Neurol","first-page":"647","article-title":"Interrelationships of sex, level of lesion, and transition outcomes among young adults with myelomeningocele","volume":"53","author":"Bellin MH","year":"2011","unstructured":"Bellin MH, Dicianno BE, Levey E,  Interrelationships of sex, level of lesion, and transition outcomes among young adults with myelomeningocele. Dev Med Child Neurol. 2011;53(7):647\u2013652."},{"issue":"5","key":"b47","series-title":"J Paediatr Child Health","first-page":"414","article-title":"Young people with spina bifida: transfer from paediatric to adult health care","volume":"34","author":"Sawyer SM","year":"1998","unstructured":"Sawyer SM, Collins N, Bryan D, Brown D, Hope MA, Bowes G. Young people with spina bifida: transfer from paediatric to adult health care. J Paediatr Child Health. 1998;34(5):414\u2013417."},{"issue":"4","key":"b48","series-title":"J Pediatr Health Care","first-page":"323","article-title":"Movin\u2019 On Up: an innovative nurse-led interdisciplinary health care transition program","volume":"30","author":"Betz CL","year":"2016","unstructured":"Betz CL, Smith KA, Van Speybroeck A, Hernandez FV, Jacobs RA. Movin\u2019 On Up: an innovative nurse-led interdisciplinary health care transition program. J Pediatr Health Care. 2016;30(4):323\u2013338."},{"key":"b49","series-title":"J Pediatr Nurs","first-page":"44","article-title":"Nurse-led eHealth transition care program for adolescents with spina bifida: a feasibility and acceptability study","volume":"67","author":"Choi EK","year":"2022","unstructured":"Choi EK, Bae E, Yun H. Nurse-led eHealth transition care program for adolescents with spina bifida: a feasibility and acceptability study. J Pediatr Nurs. 2022;67:44\u201351."},{"issue":"2","key":"b50","series-title":"Rehabil Nurs","first-page":"63","article-title":"Transitioning adolescents and young adults with a chronic health condition to adult healthcare - an exemplar program","volume":"38","author":"Kaufmann Rauen K","year":"2013","unstructured":"Kaufmann Rauen K, Sawin KJ, Bartelt T, Waring WP III, Orr M, Corey O\u2019Connor R. Transitioning adolescents and young adults with a chronic health condition to adult healthcare - an exemplar program. Rehabil Nurs. 2013;38(2):63\u201372."},{"issue":"4","key":"b51","series-title":"J Pediatr Rehabil Med","first-page":"323","article-title":"The development of a lifetime care model in comprehensive spina bifida care","volume":"11","author":"Hopson B","year":"2018","unstructured":"Hopson B, Rocque BG, Joseph DB,  The development of a lifetime care model in comprehensive spina bifida care. J Pediatr Rehabil Med. 2018;11(4):323\u2013334."},{"issue":"11","key":"b52","series-title":"N Engl J Med","first-page":"993","article-title":"A randomized trial of prenatal versus postnatal repair of myelomeningocele","volume":"364","author":"Adzick NS","year":"2011","unstructured":"Adzick NS, Thom EA, Spong CY,  A randomized trial of prenatal versus postnatal repair of myelomeningocele. N Engl J Med. 2011;364(11):993\u20131004."}],"container-title":["Neurosurgical Focus"],"original-title":[],"link":[{"URL":"https:\/\/thejns.org\/view\/journals\/neurosurg-focus\/57\/2\/article-pE3.xml","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/thejns.org\/downloadpdf\/journals\/neurosurg-focus\/57\/2\/article-pE3.xml","content-type":"text\/html","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/thejns.org\/downloadpdf\/journals\/neurosurg-focus\/57\/2\/article-pE3.xml","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,23]],"date-time":"2026-05-23T08:29:46Z","timestamp":1779524986000},"score":1,"resource":{"primary":{"URL":"https:\/\/thejns.org\/view\/journals\/neurosurg-focus\/57\/2\/article-pE3.xml"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,8,1]]},"references-count":104,"journal-issue":{"issue":"2"},"URL":"https:\/\/doi.org\/10.3171\/2024.5.focus24234","relation":{},"ISSN":["1092-0684"],"issn-type":[{"value":"1092-0684","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,8,1]]}}}