{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,23]],"date-time":"2026-05-23T09:07:57Z","timestamp":1779527277475,"version":"3.53.1"},"reference-count":44,"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>In the global environment in which neurosurgical providers practice, there is a pressing need to identify and highlight online resources to support families shifting from pediatric to adult-centered spina bifida (SB) care in general and neurosurgical care in particular. The purpose of this paper was to identify high-quality resources for clinicians and families of individuals affected by SB to be utilized during the transition years. With knowledge of, and access to, these online resources, neurosurgical providers can aim to make the transition process effective, to improve the quality of care for young adults with SB.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>METHODS<\/jats:title>\n                    <jats:p>All identified online resources were found on the GOT TRANSITION platform and by searching \"spina bifida transition resources\" between January and March 2024. Resources were coded for transition focus areas and stratified into predefined categories: 1) education for clinicians, 2) preparation for youth and families, 3) educational\/school, and 4) employment and independent living.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>RESULTS<\/jats:title>\n                    <jats:p>A total of 160 websites were cataloged; 11% of websites focused on medical provider education, 44% on preparation for youth, 29% on educational\/school resources, and 16% on employment and independent living.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>CONCLUSIONS<\/jats:title>\n                    <jats:p>In the global environment of today\u2019s medicine, online transition resources are available to assist clinicians and families in the transition process of individuals living with SB. With improved knowledge and utilization of online transition resources, neurosurgical providers can better serve individuals with SB and their families to improve quality of care with the aim of improving lifelong outcomes.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.3171\/2024.6.focus24272","type":"journal-article","created":{"date-parts":[[2024,8,1]],"date-time":"2024-08-01T07:48:52Z","timestamp":1722498532000},"page":"E6","source":"Crossref","is-referenced-by-count":0,"title":["Online healthcare transition resources for pediatric neurosurgical care: supporting the journey of individuals living with spina bifida"],"prefix":"10.3171","volume":"57","author":[{"given":"Anjali","family":"Malhotra","sequence":"first","affiliation":[{"name":"Department of Pediatrics, SUNY Upstate Medical University, Syracuse, New York;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary M.","family":"Locastro","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, SUNY Upstate Medical University, Syracuse, New York;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Heidi","family":"Castillo","sequence":"additional","affiliation":[{"name":"Department of Obstetrics and Gynecology, Baylor College of Medicine, Houston, Texas;"},{"name":"Departments of Pediatrics and"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Juan Francisco","family":"Lozano-Ramirez","sequence":"additional","affiliation":[{"name":"Instituto de Pediatria, Hospital Zambrano Hellion-TecSalud, Tecnologico de Monterrey, Escuela de Medicina y Ciencias de la Salud, Monterrey, Nuevo Leon, Mexico; and"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kellen","family":"Gandy","sequence":"additional","affiliation":[{"name":"Department of Social Sciences, University of Houston, Texas"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Viachaslau","family":"Bradko","sequence":"additional","affiliation":[{"name":"Departments of Pediatrics and"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Grace Y.","family":"Lai","sequence":"additional","affiliation":[{"name":"Neurosurgery, University of Nebraska Medical Center, Omaha, Nebraska;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jonathan","family":"Castillo","sequence":"additional","affiliation":[{"name":"Department of Obstetrics and Gynecology, Baylor College of Medicine, Houston, Texas;"},{"name":"Departments of Pediatrics and"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1754","reference":[{"issue":"2","key":"b1","series-title":"J Dev Biol","first-page":"22","article-title":"Spina bifida: a review of the genetics, pathophysiology and emerging cellular therapies","volume":"10","author":"Hassan AS","year":"2022","unstructured":"Hassan AS, Du YL, Lee SY, Wang A, Farmer DL. Spina bifida: a review of the genetics, pathophysiology and emerging cellular therapies. J Dev Biol. 2022;10(2):22."},{"issue":"3","key":"b2","series-title":"J Dev Behav Pediatr","first-page":"206","article-title":"Spina bifida grown up","volume":"34","author":"Liptak GS","year":"2013","unstructured":"Liptak GS, Garver K, Dosa NP. Spina bifida grown up. J Dev Behav Pediatr. 2013;34(3):206\u2013215."},{"issue":"5","key":"b3","series-title":"J Neurosurg Pediatr","first-page":"555","article-title":"Health care transition in pediatric neurosurgery: a consensus statement from the American Society of Pediatric Neurosurgeons","volume":"25","author":"Rocque BG","year":"2020","unstructured":"Rocque BG, Weprin BE, Blount JP,  Health care transition in pediatric neurosurgery: a consensus statement from the American Society of Pediatric Neurosurgeons. J Neurosurg Pediatr. 2020;25(5):555\u2013563."},{"key":"b4","article-title":"Spina Bifida Association","author":"Guidelines","unstructured":"Guidelines. Spina Bifida Association. Accessed June 10, 2024.https:\/\/www.spinabifidaassociation.org\/guidelines\/"},{"issue":"3","key":"b5","series-title":"Aust Health Rev","first-page":"330","article-title":"Interdisciplinary versus multidisciplinary care teams: do we understand the difference?","volume":"31","author":"Jessup RL","year":"2007","unstructured":"Jessup RL. Interdisciplinary versus multidisciplinary care teams: do we understand the difference? Aust Health Rev. 2007;31(3):330\u2013331."},{"issue":"2","key":"b6","series-title":"Disabil Health J","first-page":"100883","article-title":"Philosophy of care delivery for spina bifida","volume":"13","author":"Thibadeau J","year":"2020","unstructured":"Thibadeau J, Walker WO Jr, Castillo J,  Philosophy of care delivery for spina bifida. Disabil Health J. 2020;13(2):100883."},{"key":"b7","article-title":"Six Core Elements of Health Care Transition\u2122. Got Transition\u00ae","unstructured":"Six Core Elements of Health Care Transition\u2122. Got Transition\u00ae. Accessed June 10, 2024.https:\/\/www.gottransition.org\/six-core-elements\/"},{"issue":"6","key":"b8","series-title":"J Med Internet Res","first-page":"e143","article-title":"The impact of internet health information on patient compliance: a research model and an empirical study","volume":"17","author":"Laugesen J","year":"2015","unstructured":"Laugesen J, Hassanein K, Yuan Y. The impact of internet health information on patient compliance: a research model and an empirical study. J Med Internet Res. 2015;17(6):e143."},{"issue":"1","key":"b9","series-title":"Ann Neurosci","first-page":"18","article-title":"Web resources for neurologists and neurosurgeons","volume":"20","author":"Prasad M","year":"2013","unstructured":"Prasad M, Kumar V. Web resources for neurologists and neurosurgeons. Ann Neurosci. 2013;20(1):18\u201323."},{"issue":"4","key":"b10","series-title":"J Pediatr Rehabil Med","first-page":"583","article-title":"2023 updates to the spina bifida transition to adult care guidelines","volume":"16","author":"Fremion E","year":"2023","unstructured":"Fremion E, Kaufman M, Mukherjee S, Murphy P, Smith K. 2023 updates to the spina bifida transition to adult care guidelines. J Pediatr Rehabil Med. 2023;16(4):583\u2013593."},{"issue":"4","key":"b11","series-title":"Pediatr Clin North Am","first-page":"893","article-title":"Need for the life course model for spina bifida","volume":"57","author":"Swanson ME","year":"2010","unstructured":"Swanson ME. Need for the life course model for spina bifida. Pediatr Clin North Am. 2010;57(4):893\u2013901."},{"key":"b12","series-title":"Department of Neurosurgery, Heersink School of Medicine","article-title":"2017: UAB develops Spina Bifida Individualized Care Model","author":"Kirchner S","unstructured":"Kirchner S. 2017: UAB develops Spina Bifida Individualized Care Model. Department of Neurosurgery, Heersink School of Medicine. April 11, 2023.Accessed June 10, 2024.https:\/\/www.uab.edu\/medicine\/neurosurgery\/news-events\/department-news\/2017-uab-develops-spina-bifida-individualized-care-model"},{"issue":"4","key":"b13","series-title":"Neurosurg Focus","first-page":"E17","article-title":"Development of an evidence-based individualized transition plan for spina bifida","volume":"47","author":"Hopson B","year":"2019","unstructured":"Hopson B, Alford EN, Zimmerman K, Blount JP, Rocque BG. Development of an evidence-based individualized transition plan for spina bifida. Neurosurg Focus. 2019;47(4):E17."},{"issue":"2","key":"b14","series-title":"J Nurs Scholarsh","first-page":"198","article-title":"The transition to adult health care in youth with spina bifida: theory, measurement, and interventions","volume":"53","author":"Holmbeck GN","year":"2021","unstructured":"Holmbeck GN, Kritikos TK, Stern A, Ridosh M, Friedman CV. The transition to adult health care in youth with spina bifida: theory, measurement, and interventions. J Nurs Scholarsh. 2021;53(2):198\u2013207."},{"issue":"3","key":"b15","series-title":"Pediatrics","first-page":"580","article-title":"Decline in the prevalence of spina bifida and anencephaly by race\/ethnicity: 1995-2002","volume":"116","author":"Williams LJ","year":"2005","unstructured":"Williams LJ, Rasmussen SA, Flores A, Kirby RS, Edmonds LD. Decline in the prevalence of spina bifida and anencephaly by race\/ethnicity: 1995-2002. Pediatrics. 2005;116(3):580\u2013586."},{"issue":"Suppl 2","key":"b16","series-title":"Z Kinderchir","first-page":"129","article-title":"Where should spina bifida children go to school?","volume":"39","author":"Dodd KD","year":"1984","unstructured":"Dodd KD. Where should spina bifida children go to school? Z Kinderchir. 1984;39(Suppl 2):129-131."},{"issue":"7","key":"b17","series-title":"Disabil Rehabil","first-page":"641","article-title":"Perspectives of school-work transitions among youth with spina bifida, their parents and health care providers","volume":"39","author":"Lindsay S","year":"2017","unstructured":"Lindsay S, McPherson AC, Maxwell J. Perspectives of school-work transitions among youth with spina bifida, their parents and health care providers. Disabil Rehabil. 2017;39(7):641\u2013652."},{"key":"b18","article-title":"National Parent Center on Transition and Employment. PACER.org","unstructured":"National Parent Center on Transition and Employment. PACER.org. Accessed June 10, 2024.https:\/\/www.pacer.org\/transition\/"},{"issue":"4","key":"b19","series-title":"J Neurosurg Pediatr","first-page":"371","article-title":"Estimating the prevalence of neurosurgical interventions in adults with spina bifida using the Health Facts data set: implications for transition planning and the development of adult clinics","volume":"29","author":"Domino JS","year":"2021","unstructured":"Domino JS, Lundy P, Glynn EF, Partington M. Estimating the prevalence of neurosurgical interventions in adults with spina bifida using the Health Facts data set: implications for transition planning and the development of adult clinics. J Neurosurg Pediatr. 2021;29(4):371\u2013378."},{"issue":"3","key":"b20","series-title":"J Grad Med Educ","first-page":"449","article-title":"Reflective practice and competencies in global health training: lesson for serving diverse patient populations","volume":"2","author":"Castillo J","year":"2010","unstructured":"Castillo J, Goldenhar LM, Baker RC, Kahn RS, Dewitt TG. Reflective practice and competencies in global health training: lesson for serving diverse patient populations. J Grad Med Educ. 2010;2(3):449\u2013455."},{"issue":"3","key":"b21","series-title":"Neurosurg Focus","first-page":"E14","article-title":"Neurosurgical training and global health education: systematic review of challenges and benefits of in-country programs in the care of neural tube defects","volume":"48","author":"Gandy K","year":"2020","unstructured":"Gandy K, Castillo H, Rocque BG, Bradko V, Whitehead W, Castillo J. Neurosurgical training and global health education: systematic review of challenges and benefits of in-country programs in the care of neural tube defects. Neurosurg Focus. 2020;48(3):E14."},{"issue":"4","key":"b22","series-title":"J Pediatr Rehabil Med","first-page":"657","article-title":"Spina Bifida Global Learning Collaborative: educating the next generation of clinicians, researchers, and advocates","volume":"16","author":"Dosa NP","year":"2023","unstructured":"Dosa NP, Ahmed YS, Alriksson-Schmidt A,  Spina Bifida Global Learning Collaborative: educating the next generation of clinicians, researchers, and advocates. J Pediatr Rehabil Med. 2023;16(4):657\u2013663."},{"issue":"2","key":"b1","series-title":"J Dev Biol","first-page":"22","article-title":"Spina bifida: a review of the genetics, pathophysiology and emerging cellular therapies","volume":"10","author":"Hassan AS","year":"2022","unstructured":"Hassan AS, Du YL, Lee SY, Wang A, Farmer DL. Spina bifida: a review of the genetics, pathophysiology and emerging cellular therapies. J Dev Biol. 2022;10(2):22."},{"issue":"3","key":"b2","series-title":"J Dev Behav Pediatr","first-page":"206","article-title":"Spina bifida grown up","volume":"34","author":"Liptak GS","year":"2013","unstructured":"Liptak GS, Garver K, Dosa NP. Spina bifida grown up. J Dev Behav Pediatr. 2013;34(3):206\u2013215."},{"issue":"5","key":"b3","series-title":"J Neurosurg Pediatr","first-page":"555","article-title":"Health care transition in pediatric neurosurgery: a consensus statement from the American Society of Pediatric Neurosurgeons","volume":"25","author":"Rocque BG","year":"2020","unstructured":"Rocque BG, Weprin BE, Blount JP,  Health care transition in pediatric neurosurgery: a consensus statement from the American Society of Pediatric Neurosurgeons. J Neurosurg Pediatr. 2020;25(5):555\u2013563."},{"key":"b4","article-title":"Spina Bifida Association","author":"Guidelines","unstructured":"Guidelines. Spina Bifida Association. Accessed June 10, 2024.https:\/\/www.spinabifidaassociation.org\/guidelines\/"},{"issue":"3","key":"b5","series-title":"Aust Health Rev","first-page":"330","article-title":"Interdisciplinary versus multidisciplinary care teams: do we understand the difference?","volume":"31","author":"Jessup RL","year":"2007","unstructured":"Jessup RL. Interdisciplinary versus multidisciplinary care teams: do we understand the difference? Aust Health Rev. 2007;31(3):330\u2013331."},{"issue":"2","key":"b6","series-title":"Disabil Health J","first-page":"100883","article-title":"Philosophy of care delivery for spina bifida","volume":"13","author":"Thibadeau J","year":"2020","unstructured":"Thibadeau J, Walker WO Jr, Castillo J,  Philosophy of care delivery for spina bifida. Disabil Health J. 2020;13(2):100883."},{"key":"b7","article-title":"Six Core Elements of Health Care Transition\u2122. Got Transition\u00ae","unstructured":"Six Core Elements of Health Care Transition\u2122. Got Transition\u00ae. Accessed June 10, 2024.https:\/\/www.gottransition.org\/six-core-elements\/"},{"issue":"6","key":"b8","series-title":"J Med Internet Res","first-page":"e143","article-title":"The impact of internet health information on patient compliance: a research model and an empirical study","volume":"17","author":"Laugesen J","year":"2015","unstructured":"Laugesen J, Hassanein K, Yuan Y. The impact of internet health information on patient compliance: a research model and an empirical study. J Med Internet Res. 2015;17(6):e143."},{"issue":"1","key":"b9","series-title":"Ann Neurosci","first-page":"18","article-title":"Web resources for neurologists and neurosurgeons","volume":"20","author":"Prasad M","year":"2013","unstructured":"Prasad M, Kumar V. Web resources for neurologists and neurosurgeons. Ann Neurosci. 2013;20(1):18\u201323."},{"issue":"4","key":"b10","series-title":"J Pediatr Rehabil Med","first-page":"583","article-title":"2023 updates to the spina bifida transition to adult care guidelines","volume":"16","author":"Fremion E","year":"2023","unstructured":"Fremion E, Kaufman M, Mukherjee S, Murphy P, Smith K. 2023 updates to the spina bifida transition to adult care guidelines. J Pediatr Rehabil Med. 2023;16(4):583\u2013593."},{"issue":"4","key":"b11","series-title":"Pediatr Clin North Am","first-page":"893","article-title":"Need for the life course model for spina bifida","volume":"57","author":"Swanson ME","year":"2010","unstructured":"Swanson ME. Need for the life course model for spina bifida. Pediatr Clin North Am. 2010;57(4):893\u2013901."},{"key":"b12","series-title":"Department of Neurosurgery, Heersink School of Medicine","article-title":"2017: UAB develops Spina Bifida Individualized Care Model","author":"Kirchner S","unstructured":"Kirchner S. 2017: UAB develops Spina Bifida Individualized Care Model. Department of Neurosurgery, Heersink School of Medicine. April 11, 2023.Accessed June 10, 2024.https:\/\/www.uab.edu\/medicine\/neurosurgery\/news-events\/department-news\/2017-uab-develops-spina-bifida-individualized-care-model"},{"issue":"4","key":"b13","series-title":"Neurosurg Focus","first-page":"E17","article-title":"Development of an evidence-based individualized transition plan for spina bifida","volume":"47","author":"Hopson B","year":"2019","unstructured":"Hopson B, Alford EN, Zimmerman K, Blount JP, Rocque BG. Development of an evidence-based individualized transition plan for spina bifida. Neurosurg Focus. 2019;47(4):E17."},{"issue":"2","key":"b14","series-title":"J Nurs Scholarsh","first-page":"198","article-title":"The transition to adult health care in youth with spina bifida: theory, measurement, and interventions","volume":"53","author":"Holmbeck GN","year":"2021","unstructured":"Holmbeck GN, Kritikos TK, Stern A, Ridosh M, Friedman CV. The transition to adult health care in youth with spina bifida: theory, measurement, and interventions. J Nurs Scholarsh. 2021;53(2):198\u2013207."},{"issue":"3","key":"b15","series-title":"Pediatrics","first-page":"580","article-title":"Decline in the prevalence of spina bifida and anencephaly by race\/ethnicity: 1995-2002","volume":"116","author":"Williams LJ","year":"2005","unstructured":"Williams LJ, Rasmussen SA, Flores A, Kirby RS, Edmonds LD. Decline in the prevalence of spina bifida and anencephaly by race\/ethnicity: 1995-2002. Pediatrics. 2005;116(3):580\u2013586."},{"issue":"Suppl 2","key":"b16","series-title":"Z Kinderchir","first-page":"129","article-title":"Where should spina bifida children go to school?","volume":"39","author":"Dodd KD","year":"1984","unstructured":"Dodd KD. Where should spina bifida children go to school? Z Kinderchir. 1984;39(Suppl 2):129-131."},{"issue":"7","key":"b17","series-title":"Disabil Rehabil","first-page":"641","article-title":"Perspectives of school-work transitions among youth with spina bifida, their parents and health care providers","volume":"39","author":"Lindsay S","year":"2017","unstructured":"Lindsay S, McPherson AC, Maxwell J. Perspectives of school-work transitions among youth with spina bifida, their parents and health care providers. Disabil Rehabil. 2017;39(7):641\u2013652."},{"key":"b18","article-title":"National Parent Center on Transition and Employment. PACER.org","unstructured":"National Parent Center on Transition and Employment. PACER.org. Accessed June 10, 2024.https:\/\/www.pacer.org\/transition\/"},{"issue":"4","key":"b19","series-title":"J Neurosurg Pediatr","first-page":"371","article-title":"Estimating the prevalence of neurosurgical interventions in adults with spina bifida using the Health Facts data set: implications for transition planning and the development of adult clinics","volume":"29","author":"Domino JS","year":"2021","unstructured":"Domino JS, Lundy P, Glynn EF, Partington M. Estimating the prevalence of neurosurgical interventions in adults with spina bifida using the Health Facts data set: implications for transition planning and the development of adult clinics. J Neurosurg Pediatr. 2021;29(4):371\u2013378."},{"issue":"3","key":"b20","series-title":"J Grad Med Educ","first-page":"449","article-title":"Reflective practice and competencies in global health training: lesson for serving diverse patient populations","volume":"2","author":"Castillo J","year":"2010","unstructured":"Castillo J, Goldenhar LM, Baker RC, Kahn RS, Dewitt TG. Reflective practice and competencies in global health training: lesson for serving diverse patient populations. J Grad Med Educ. 2010;2(3):449\u2013455."},{"issue":"3","key":"b21","series-title":"Neurosurg Focus","first-page":"E14","article-title":"Neurosurgical training and global health education: systematic review of challenges and benefits of in-country programs in the care of neural tube defects","volume":"48","author":"Gandy K","year":"2020","unstructured":"Gandy K, Castillo H, Rocque BG, Bradko V, Whitehead W, Castillo J. Neurosurgical training and global health education: systematic review of challenges and benefits of in-country programs in the care of neural tube defects. Neurosurg Focus. 2020;48(3):E14."},{"issue":"4","key":"b22","series-title":"J Pediatr Rehabil Med","first-page":"657","article-title":"Spina Bifida Global Learning Collaborative: educating the next generation of clinicians, researchers, and advocates","volume":"16","author":"Dosa NP","year":"2023","unstructured":"Dosa NP, Ahmed YS, Alriksson-Schmidt A,  Spina Bifida Global Learning Collaborative: educating the next generation of clinicians, researchers, and advocates. J Pediatr Rehabil Med. 2023;16(4):657\u2013663."}],"container-title":["Neurosurgical Focus"],"original-title":[],"link":[{"URL":"https:\/\/thejns.org\/view\/journals\/neurosurg-focus\/57\/2\/article-pE6.xml","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/thejns.org\/downloadpdf\/journals\/neurosurg-focus\/57\/2\/article-pE6.xml","content-type":"text\/html","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/thejns.org\/downloadpdf\/journals\/neurosurg-focus\/57\/2\/article-pE6.xml","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,23]],"date-time":"2026-05-23T08:29:42Z","timestamp":1779524982000},"score":1,"resource":{"primary":{"URL":"https:\/\/thejns.org\/view\/journals\/neurosurg-focus\/57\/2\/article-pE6.xml"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,8,1]]},"references-count":44,"journal-issue":{"issue":"2"},"URL":"https:\/\/doi.org\/10.3171\/2024.6.focus24272","relation":{},"ISSN":["1092-0684"],"issn-type":[{"value":"1092-0684","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,8,1]]}}}