{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,4]],"date-time":"2026-05-04T09:49:32Z","timestamp":1777888172601,"version":"3.51.4"},"reference-count":17,"publisher":"SAGE Publications","issue":"4","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["PRM"],"published-print":{"date-parts":[[2021,12,23]]},"abstract":"<jats:p>PURPOSE: Children with myelomeningocele are known to be consumers of substantial healthcare resources, with many early hospital encounters. The purpose of this study was to survey the extent of medical and surgical care that patients with myelomeningocele receive during the first four years of life. METHODS: Clinical and demographic data were collected on newborn infants with open myelomeningocele from the Children\u2019s of Alabama Spina Bifida Web Tracker, a prospective, comprehensive spina bifida database. Additional data pertaining to all hospital admissions, surgical procedures, and clinic visits were collected from the medical record. RESULTS: One hundred and fourteen subjects with a primary diagnosis of myelomeningocele between 2004 and 2015 were included. Males slightly predominated (55%), 61.4% were Caucasian, 11% Hispanic\/Latino; 28% had a mid-lumbar functional lesion level. Over the first four years of life, 688 total surgical procedures were performed (an average of 86 per child): 438 in year 1, 100 in year 2, 84 in year 3, and 66 in year 4. The mean number of hospital visits was 40.5. Total average drive time per patient over 4 years being 103.8 hours. Average number of nights spent in the hospital was 51. CONCLUSION: Children with myelomeningocele need multiple hospitalizations, surgeries, and medical encounters in the first 4 years of life. These data will be valuable when counselling new parents and prospective parents of children with this condition.<\/jats:p>","DOI":"10.3233\/prm-200803","type":"journal-article","created":{"date-parts":[[2021,11,30]],"date-time":"2021-11-30T17:21:25Z","timestamp":1638292885000},"page":"667-673","source":"Crossref","is-referenced-by-count":3,"title":["Scope of care in the first four years of life for individuals born with myelomeningocele: A single institution experience1"],"prefix":"10.1177","volume":"14","author":[{"given":"Betsy","family":"Hopson","sequence":"first","affiliation":[{"name":"Department of Neurosurgery, Division of Pediatrics, University of Alabama at Birmingham, Birmingham, AL, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Isaac","family":"Shamblin","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Division of Pediatrics, University of Alabama at Birmingham, Birmingham, AL, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kathrin","family":"Zimmerman","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Division of Pediatrics, University of Alabama at Birmingham, Birmingham, AL, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Brandon","family":"Rocque","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Division of Pediatrics, University of Alabama at Birmingham, Birmingham, AL, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Arsalaan","family":"Salehani","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, University of Alabama at Birmingham, Birmingham, AL, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jeffrey P.","family":"Blount","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Division of Pediatrics, University of Alabama at Birmingham, Birmingham, AL, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","reference":[{"issue":"4","key":"10.3233\/PRM-200803_ref1","doi-asserted-by":"publisher","first-page":"323","DOI":"10.3233\/PRM-180548","article-title":"The development of a lifetime care model in comprehensive spina bifida care","volume":"11","author":"Hopson","year":"2018","journal-title":"J Pediatr Rehabil Med"},{"issue":"4","key":"10.3233\/PRM-200803_ref2","doi-asserted-by":"publisher","first-page":"457","DOI":"10.3233\/PRM-200691","article-title":"Preface to the Special Issue for the Guidelines for the Care of People with Spina Bifida","volume":"13","author":"Dicianno","year":"2020","journal-title":"J Pediatr Rehabil Med"},{"key":"10.3233\/PRM-200803_ref3","doi-asserted-by":"publisher","DOI":"10.3171\/2019.5.PEDS18738"},{"issue":"1","key":"10.3233\/PRM-200803_ref4","doi-asserted-by":"publisher","first-page":"36","DOI":"10.1159\/000120812","article-title":"Disbanding a multidisciplinary clinic: effects on the health care of myelomeningocele patients","volume":"21","author":"Kaufman","year":"1994","journal-title":"Pediatr Neurosurg"},{"issue":"3-4","key":"10.3233\/PRM-200803_ref5","doi-asserted-by":"publisher","first-page":"205","DOI":"10.3233\/PRM-170463","article-title":"The National Spina Bifida Patient Registry: Past, present, and future","volume":"10","author":"Thibadeau","year":"2017","journal-title":"J Pediatr Rehabil Med"},{"issue":"1","key":"10.3233\/PRM-200803_ref6","doi-asserted-by":"publisher","first-page":"36","DOI":"10.1002\/bdra.23094","article-title":"Testing the feasibility of a National Spina Bifida Patient Registry","volume":"97","author":"Thibadeau","year":"2013","journal-title":"Birt Defects Res A Clin Mol Teratol"},{"issue":"3","key":"10.3233\/PRM-200803_ref7","doi-asserted-by":"publisher","first-page":"e20173730","DOI":"10.1542\/peds.2017-3730","article-title":"Surgeries and Health Outcomes Among Patients With Spina Bifida","volume":"142","author":"Alabi","year":"2018","journal-title":"Pediatrics"},{"issue":"5","key":"10.3233\/PRM-200803_ref8","doi-asserted-by":"publisher","first-page":"E6","DOI":"10.3171\/2016.8.FOCUS16257","article-title":"Rate of shunt revision as a function of age in patients with shunted hydrocephalus due to myelomeningocele","volume":"41","author":"Dupepe","year":"2016","journal-title":"Neurosurg Focus"},{"key":"10.3233\/PRM-200803_ref9","doi-asserted-by":"publisher","first-page":"15007","DOI":"10.1038\/nrdp.2015.7","article-title":"Spina Bifida","volume":"1","author":"Copp","year":"2015","journal-title":"Nat Rev Dis Primer"},{"issue":"1","key":"10.3233\/PRM-200803_ref10","doi-asserted-by":"publisher","first-page":"132","DOI":"10.1542\/peds.2013-0557","article-title":"Variation in Definitions of Urinary Tract Infections in Spina Bifida Patients: A Systematic Review","volume":"132","author":"Madden-Fuentes","year":"2013","journal-title":"Pediatrics"},{"issue":"1","key":"10.3233\/PRM-200803_ref11","doi-asserted-by":"publisher","first-page":"268","DOI":"10.1016\/j.juro.2014.06.085","article-title":"Emergent Care Patterns in Patients with Spina Bifida: A Case-Control Study","volume":"193","author":"Wang","year":"2015","journal-title":"J Urol"},{"issue":"6","key":"10.3233\/PRM-200803_ref12","doi-asserted-by":"publisher","first-page":"614.e1","DOI":"10.1016\/j.jpurol.2017.04.016","article-title":"Is urodynamic evaluation a must in all operated cases of open neural tube defects","volume":"13","author":"Bawa","year":"2017","journal-title":"J Pediatr Urol"},{"issue":"2","key":"10.3233\/PRM-200803_ref13","doi-asserted-by":"publisher","first-page":"151","DOI":"10.1007\/s11934-008-0027-y","article-title":"Current approaches to the urologic care of children with spina bifida","volume":"9","author":"Joseph","year":"2008","journal-title":"Curr Urol Rep"},{"issue":"1","key":"10.3233\/PRM-200803_ref14","doi-asserted-by":"publisher","first-page":"14","DOI":"10.1111\/j.1469-8749.1990.tb08462.x","article-title":"Parental Attitudes Toward Management of Newborns with Myelomeningocele","volume":"32","author":"Charney","year":"1990","journal-title":"Dev Med Child Neurol"},{"issue":"1","key":"10.3233\/PRM-200803_ref15","doi-asserted-by":"publisher","first-page":"4","DOI":"10.1007\/s40120-012-0004-8","article-title":"The Impact of Spina Bifida on Caregivers","volume":"1","author":"Rofail","year":"2012","journal-title":"Neurol Ther"},{"issue":"2","key":"10.3233\/PRM-200803_ref16","doi-asserted-by":"publisher","first-page":"71","DOI":"10.1080\/24694193.2016.1273978","article-title":"Depressive symptoms in parents of children with spina bifida: a review of the literature","volume":"40","author":"Ridosh","year":"2017","journal-title":"Compr Child Adolesc Nurs"},{"key":"10.3233\/PRM-200803_ref17","doi-asserted-by":"publisher","first-page":"32","DOI":"10.1186\/1471-2431-5-32","article-title":"Parents\u2019 psychological adjustment in families of children with spina bifida: a meta-analysis","volume":"5","author":"Vermaes","year":"2005","journal-title":"BMC Pediatr"}],"container-title":["Journal of Pediatric Rehabilitation Medicine"],"original-title":[],"link":[{"URL":"https:\/\/content.iospress.com\/download?id=10.3233\/PRM-200803","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T04:37:53Z","timestamp":1777610273000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/full\/10.3233\/PRM-200803"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,12,23]]},"references-count":17,"journal-issue":{"issue":"4"},"URL":"https:\/\/doi.org\/10.3233\/prm-200803","relation":{},"ISSN":["1874-5393","1875-8894"],"issn-type":[{"value":"1874-5393","type":"print"},{"value":"1875-8894","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,12,23]]}}}