{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,23]],"date-time":"2026-05-23T09:07:10Z","timestamp":1779527230507,"version":"3.53.1"},"reference-count":46,"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":"\n OBJECTIVE<\/jats:title>\n Interdisciplinary care and pediatric to adult transitional programs have consistently shown medical and social value for individuals with complex medical conditions such as spina bifida (SB). Such interdisciplinary clinics are common in pediatrics but are rarely offered for adults. This survey-based study reports information related to transition, daily pain burden, and satisfaction with care delivery in an adult SB clinic.<\/jats:p>\n <\/jats:sec>\n \n METHODS<\/jats:title>\n A 23-question survey that was based on empirical observations from the adult SB clinic was formulated, IRB approved, and distributed to adult patients. Many respondents had previously received care at the institution\u2019s pediatric SB clinic and completed transition to the adult program. Responses were de-identified, categorized, stored in a secure database, and statistically analyzed using SPSS.<\/jats:p>\n <\/jats:sec>\n \n RESULTS<\/jats:title>\n Of 245 patients approached, 116 (47%) surveys were completed and analyzed. Those who had a direct transition (defined as a less than 24-month gap in care) from the pediatric to the adult clinic comprised 44% (n = 51) of responders. The alternative group of 56% (n = 65) had a longer gap, disorganized or absent transition, or had pediatric care elsewhere. The study population had an average age of 36 years, had mostly received childhood care at the authors\u2019 institution, regardless of whether they made a direct transition or had a gap in care (68%), and held the diagnosis of open myelomeningocele (78%). Overall satisfaction with the clinic experience was high (mean score 9.04 on a 10-point subjective scale). Differences regarding independence in activities of daily living based on transition status were not significant, but on multivariate analysis, those who reported independence in activities of daily living had an almost 4-fold higher odds of daily pain (p = 0.024; OR 3.86, 95% CI 1.19\u201312.5). The most frequently identified areas for improvement included improved access to care and pain control.<\/jats:p>\n <\/jats:sec>\n \n CONCLUSIONS<\/jats:title>\n Pediatric transitional processes and interdisciplinary clinics may contribute to improved patient-perceived outcomes and satisfaction with their SB care in comprehensive settings. Further elucidation of barriers to pain control is warranted, in addition to ways in which comprehensive and longitudinal care can improve them.<\/jats:p>\n <\/jats:sec>","DOI":"10.3171\/2024.5.focus24260","type":"journal-article","created":{"date-parts":[[2024,8,1]],"date-time":"2024-08-01T07:28:40Z","timestamp":1722497320000},"page":"E8","source":"Crossref","is-referenced-by-count":4,"title":["The role of a dedicated transition process from pediatric to adult interdisciplinary care for persons with spina bifida"],"prefix":"10.3171","volume":"57","author":[{"given":"Victoria","family":"Jiminez","sequence":"first","affiliation":[{"name":"University of Alabama at Birmingham, Heersink School of Medicine, Birmingham;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Betsy","family":"Hopson","sequence":"additional","affiliation":[{"name":"Department of Pediatric Neurosurgery, Children\u2019s of Alabama, Birmingham, Alabama"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Caroline","family":"Caudill","sequence":"additional","affiliation":[{"name":"Department of Pediatric Neurosurgery, Children\u2019s of Alabama, Birmingham, Alabama"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anastasia","family":"Arynchyna-Smith","sequence":"additional","affiliation":[{"name":"Department of Pediatric Neurosurgery, Children\u2019s of Alabama, Birmingham, Alabama"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Suzannah","family":"Rogers","sequence":"additional","affiliation":[{"name":"Department of Pediatric Neurosurgery, Children\u2019s of Alabama, Birmingham, Alabama"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brandon G.","family":"Rocque","sequence":"additional","affiliation":[{"name":"Department of Pediatric Neurosurgery, Children\u2019s of Alabama, Birmingham, Alabama"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jeffrey P.","family":"Blount","sequence":"additional","affiliation":[{"name":"Department of Pediatric Neurosurgery, Children\u2019s of Alabama, Birmingham, Alabama"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1754","reference":[{"issue":"3","key":"b1","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":"b2","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":"2","key":"b3","series-title":"J Adv Nurs","first-page":"608","article-title":"Transition programs for adolescents and young adults with spina bifida: a mixed-methods systematic review","volume":"77","author":"Choi EK","year":"2021","unstructured":"Choi EK, Bae E, Jang M. Transition programs for adolescents and young adults with spina bifida: a mixed-methods systematic review. J Adv Nurs. 2021;77(2):608\u2013621."},{"issue":"4","key":"b4","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":"Suppl 1","key":"b5","series-title":"Eur J Pediatr Surg","first-page":"35","article-title":"Beyond multidisciplinary care: a new conceptual model for spina bifida services","volume":"10","author":"Kinsman SL","year":"2000","unstructured":"Kinsman SL, Levey E, Ruffing V, Stone J, Warren L. Beyond multidisciplinary care: a new conceptual model for spina bifida services. Eur J Pediatr Surg. 2000;10(Suppl 1):35-38."},{"issue":"1","key":"b6","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":"4","key":"b7","series-title":"J Pediatr Rehabil Med","first-page":"513","article-title":"Health promotion and preventive health care service guidelines for the care of people with spina bifida","volume":"13","author":"Fremion E","year":"2020","unstructured":"Fremion E, Kanter D, Turk M. Health promotion and preventive health care service guidelines for the care of people with spina bifida. J Pediatr Rehabil Med. 2020;13(4):513\u2013523."},{"issue":"4","key":"b8","series-title":"J Pediatr Rehabil Med","first-page":"423","article-title":"Spina bifida transition to adult healthcare guidelines","volume":"12","author":"Fremion EJ","year":"2019","unstructured":"Fremion EJ, Dosa NP. Spina bifida transition to adult healthcare guidelines. J Pediatr Rehabil Med. 2019;12(4):423\u2013429."},{"issue":"6 Pt 2","key":"b9","series-title":"Pediatrics","first-page":"1304","article-title":"American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs","volume":"110","year":"2002","unstructured":"American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110(6 Pt 2):1304\u20131306."},{"issue":"1","key":"b10","series-title":"Pediatrics","first-page":"182","article-title":"Supporting the health care transition from adolescence to adulthood in the medical home","volume":"128","author":"Cooley WC","year":"2011","unstructured":"Cooley WC, Sagerman PJ. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;128(1):182\u2013200."},{"issue":"1","key":"b11","series-title":"Healthc (Amst)","first-page":"57","article-title":"Better health, less spending: redesigning the transition from pediatric to adult healthcare for youth with chronic illness","volume":"4","author":"Vaks Y","year":"2016","unstructured":"Vaks Y, Bensen R, Steidtmann D, Better health, less spending: redesigning the transition from pediatric to adult healthcare for youth with chronic illness. 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J Pediatr Rehabil Med. 2020;13(4):467\u2013477."},{"issue":"4","key":"b14","series-title":"J Pediatr Rehabil Med","first-page":"479","article-title":"Urologic guidelines for the care and management of people with spina bifida","volume":"13","author":"Joseph DB","year":"2020","unstructured":"Joseph DB, Baum MA, Tanaka ST, Urologic guidelines for the care and management of people with spina bifida. J Pediatr Rehabil Med. 2020;13(4):479\u2013489."},{"issue":"4","key":"b15","series-title":"Pediatrics","first-page":"e957","article-title":"Sociodemographic attributes and spina bifida outcomes","volume":"135","author":"Schechter MS","year":"2015","unstructured":"Schechter MS, Liu T, Soe M, Swanson M, Ward E, Thibadeau J. Sociodemographic attributes and spina bifida outcomes. Pediatrics. 2015;135(4):e957\u2013e964."},{"issue":"3","key":"b16","series-title":"Child Care Health Dev","first-page":"508","article-title":"Trajectories of self-management and independence in youth with spina bifida: demographic predictors of growth","volume":"49","author":"Ridosh MM","year":"2023","unstructured":"Ridosh MM, Adams W, Maga\u00f1a F, Sawin KJ, Holmbeck GN. Trajectories of self-management and independence in youth with spina bifida: demographic predictors of growth. Child Care Health Dev. 2023;49(3):508\u2013517."},{"issue":"9","key":"b17","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":"9","key":"b18","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."},{"issue":"7","key":"b19","series-title":"Heliyon","first-page":"e09918","article-title":"Opioid prescription patterns among adults with cerebral palsy and spina bifida","volume":"8","author":"Peterson MD","year":"2022","unstructured":"Peterson MD, Kamdar N, Haapala HJ, Brummett C, Hurvitz EA. Opioid prescription patterns among adults with cerebral palsy and spina bifida. Heliyon. 2022;8(7):e09918."},{"issue":"4","key":"b20","series-title":"J Pediatr Rehabil Med","first-page":"499","article-title":"Care coordination guidelines for the care of people with spina bifida","volume":"13","author":"Van Speybroeck A","year":"2020","unstructured":"Van Speybroeck A, Beierwaltes P, Hopson B, Care coordination guidelines for the care of people with spina bifida. J Pediatr Rehabil Med. 2020;13(4):499\u2013511."},{"issue":"4","key":"b21","series-title":"Neurosurg Focus","first-page":"E16","article-title":"Growing up with spina bifida: bridging the gaps in the transition of care from childhood to adulthood","volume":"47","author":"Patel SK","year":"2019","unstructured":"Patel SK, Staarmann B, Heilman A, Mains A, Woodward J, Bierbrauer KS. Growing up with spina bifida: bridging the gaps in the transition of care from childhood to adulthood. Neurosurg Focus. 2019;47(4):E16."},{"key":"b22","series-title":"J Pediatr Nurs","first-page":"81","article-title":"Guidelines for care of people with spina bifida","volume":"45","author":"Beierwaltes P","year":"2019","unstructured":"Beierwaltes P. Guidelines for care of people with spina bifida. J Pediatr Nurs. 2019;45:81\u201382."},{"issue":"4","key":"b23","series-title":"J Pediatr Rehabil Med","first-page":"637","article-title":"Nutrition, metabolic syndrome, and obesity: guidelines for the care of people with spina bifida","volume":"13","author":"McPherson AC","year":"2020","unstructured":"McPherson AC, Chen L, O\u2019Neil J, Vanderbom KA. Nutrition, metabolic syndrome, and obesity: guidelines for the care of people with spina bifida. J Pediatr Rehabil Med. 2020;13(4):637\u2013653."},{"issue":"3","key":"b1","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":"b2","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":"2","key":"b3","series-title":"J Adv Nurs","first-page":"608","article-title":"Transition programs for adolescents and young adults with spina bifida: a mixed-methods systematic review","volume":"77","author":"Choi EK","year":"2021","unstructured":"Choi EK, Bae E, Jang M. Transition programs for adolescents and young adults with spina bifida: a mixed-methods systematic review. J Adv Nurs. 2021;77(2):608\u2013621."},{"issue":"4","key":"b4","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":"Suppl 1","key":"b5","series-title":"Eur J Pediatr Surg","first-page":"35","article-title":"Beyond multidisciplinary care: a new conceptual model for spina bifida services","volume":"10","author":"Kinsman SL","year":"2000","unstructured":"Kinsman SL, Levey E, Ruffing V, Stone J, Warren L. Beyond multidisciplinary care: a new conceptual model for spina bifida services. Eur J Pediatr Surg. 2000;10(Suppl 1):35-38."},{"issue":"1","key":"b6","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":"4","key":"b7","series-title":"J Pediatr Rehabil Med","first-page":"513","article-title":"Health promotion and preventive health care service guidelines for the care of people with spina bifida","volume":"13","author":"Fremion E","year":"2020","unstructured":"Fremion E, Kanter D, Turk M. Health promotion and preventive health care service guidelines for the care of people with spina bifida. J Pediatr Rehabil Med. 2020;13(4):513\u2013523."},{"issue":"4","key":"b8","series-title":"J Pediatr Rehabil Med","first-page":"423","article-title":"Spina bifida transition to adult healthcare guidelines","volume":"12","author":"Fremion EJ","year":"2019","unstructured":"Fremion EJ, Dosa NP. Spina bifida transition to adult healthcare guidelines. J Pediatr Rehabil Med. 2019;12(4):423\u2013429."},{"issue":"6 Pt 2","key":"b9","series-title":"Pediatrics","first-page":"1304","article-title":"American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs","volume":"110","year":"2002","unstructured":"American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110(6 Pt 2):1304\u20131306."},{"issue":"1","key":"b10","series-title":"Pediatrics","first-page":"182","article-title":"Supporting the health care transition from adolescence to adulthood in the medical home","volume":"128","author":"Cooley WC","year":"2011","unstructured":"Cooley WC, Sagerman PJ. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;128(1):182\u2013200."},{"issue":"1","key":"b11","series-title":"Healthc (Amst)","first-page":"57","article-title":"Better health, less spending: redesigning the transition from pediatric to adult healthcare for youth with chronic illness","volume":"4","author":"Vaks Y","year":"2016","unstructured":"Vaks Y, Bensen R, Steidtmann D, Better health, less spending: redesigning the transition from pediatric to adult healthcare for youth with chronic illness. Healthc (Amst). 2016;4(1):57\u201368."},{"issue":"4","key":"b12","series-title":"Pediatr Clin North Am","first-page":"915","article-title":"Caring for the child with spina bifida","volume":"68","author":"Rocque BG","year":"2021","unstructured":"Rocque BG, Hopson BD, Blount JP. Caring for the child with spina bifida. Pediatr Clin North Am. 2021;68(4):915\u2013927."},{"issue":"4","key":"b13","series-title":"J Pediatr Rehabil Med","first-page":"467","article-title":"Neurosurgery guidelines for the care of people with spina bifida","volume":"13","author":"Blount JP","year":"2020","unstructured":"Blount JP, Bowman R, Dias MS, Hopson B, Partington MD, Rocque BG. Neurosurgery guidelines for the care of people with spina bifida. J Pediatr Rehabil Med. 2020;13(4):467\u2013477."},{"issue":"4","key":"b14","series-title":"J Pediatr Rehabil Med","first-page":"479","article-title":"Urologic guidelines for the care and management of people with spina bifida","volume":"13","author":"Joseph DB","year":"2020","unstructured":"Joseph DB, Baum MA, Tanaka ST, Urologic guidelines for the care and management of people with spina bifida. J Pediatr Rehabil Med. 2020;13(4):479\u2013489."},{"issue":"4","key":"b15","series-title":"Pediatrics","first-page":"e957","article-title":"Sociodemographic attributes and spina bifida outcomes","volume":"135","author":"Schechter MS","year":"2015","unstructured":"Schechter MS, Liu T, Soe M, Swanson M, Ward E, Thibadeau J. Sociodemographic attributes and spina bifida outcomes. Pediatrics. 2015;135(4):e957\u2013e964."},{"issue":"3","key":"b16","series-title":"Child Care Health Dev","first-page":"508","article-title":"Trajectories of self-management and independence in youth with spina bifida: demographic predictors of growth","volume":"49","author":"Ridosh MM","year":"2023","unstructured":"Ridosh MM, Adams W, Maga\u00f1a F, Sawin KJ, Holmbeck GN. Trajectories of self-management and independence in youth with spina bifida: demographic predictors of growth. Child Care Health Dev. 2023;49(3):508\u2013517."},{"issue":"9","key":"b17","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":"9","key":"b18","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."},{"issue":"7","key":"b19","series-title":"Heliyon","first-page":"e09918","article-title":"Opioid prescription patterns among adults with cerebral palsy and spina bifida","volume":"8","author":"Peterson MD","year":"2022","unstructured":"Peterson MD, Kamdar N, Haapala HJ, Brummett C, Hurvitz EA. Opioid prescription patterns among adults with cerebral palsy and spina bifida. Heliyon. 2022;8(7):e09918."},{"issue":"4","key":"b20","series-title":"J Pediatr Rehabil Med","first-page":"499","article-title":"Care coordination guidelines for the care of people with spina bifida","volume":"13","author":"Van Speybroeck A","year":"2020","unstructured":"Van Speybroeck A, Beierwaltes P, Hopson B, Care coordination guidelines for the care of people with spina bifida. J Pediatr Rehabil Med. 2020;13(4):499\u2013511."},{"issue":"4","key":"b21","series-title":"Neurosurg Focus","first-page":"E16","article-title":"Growing up with spina bifida: bridging the gaps in the transition of care from childhood to adulthood","volume":"47","author":"Patel SK","year":"2019","unstructured":"Patel SK, Staarmann B, Heilman A, Mains A, Woodward J, Bierbrauer KS. Growing up with spina bifida: bridging the gaps in the transition of care from childhood to adulthood. Neurosurg Focus. 2019;47(4):E16."},{"key":"b22","series-title":"J Pediatr Nurs","first-page":"81","article-title":"Guidelines for care of people with spina bifida","volume":"45","author":"Beierwaltes P","year":"2019","unstructured":"Beierwaltes P. Guidelines for care of people with spina bifida. J Pediatr Nurs. 2019;45:81\u201382."},{"issue":"4","key":"b23","series-title":"J Pediatr Rehabil Med","first-page":"637","article-title":"Nutrition, metabolic syndrome, and obesity: guidelines for the care of people with spina bifida","volume":"13","author":"McPherson AC","year":"2020","unstructured":"McPherson AC, Chen L, O\u2019Neil J, Vanderbom KA. Nutrition, metabolic syndrome, and obesity: guidelines for the care of people with spina bifida. 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