{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,23]],"date-time":"2026-09-23T23:12:37Z","timestamp":1790205157697,"version":"4.1.0"},"reference-count":16,"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: The objective of this study was to describe the knowledge, attitudes, and practices related to caring for youth with SB within a statewide pediatric primary care medical home network. METHODS: Health care professionals who were members of the Pennsylvania Medical Home Program (PAMHP) statewide network were surveyed on sociological demographics, confidence in and knowledge of topics that impact the spina bifida (SB) population, education on SB, designating responsibility of care, tasks completed in the office, and transition from pediatric to adult care from October 2016 through November 2016. RESULTS: Among 67 respondents, 78%believed counseling families\/caregivers about the impact of SB on everyday life was a shared responsibility between primary care physicians (PCP) and SB clinics. Eighty five percent of participants indicated they had exposure to SB through clinical courses or didactics in training but only 54%of participants felt knowledgeable on the impact of SB on everyday life. CONCLUSION: Findings suggest a need for increased educational efforts, improved awareness of SB, and access to evidence-based guidelines for PCPs to promote accessible and coordinated care to individuals with SB.<\/jats:p>","DOI":"10.3233\/prm-210039","type":"journal-article","created":{"date-parts":[[2021,12,7]],"date-time":"2021-12-07T14:14:29Z","timestamp":1638886469000},"page":"681-689","source":"Crossref","is-referenced-by-count":1,"title":["Primary care providers need education and resources to provide optimal care for children and adults with spina bifida"],"prefix":"10.1177","volume":"14","author":[{"given":"Amanda E.","family":"Garver","sequence":"first","affiliation":[{"name":"Department of Neurology and Rehabilitation Medicine, University of Cincinnati College of Medicine, Cincinnati, OH, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Salini","family":"Mohanty","sequence":"additional","affiliation":[{"name":"Pennsylvania Chapter of the American Academy of Pediatrics, Media, PA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brad E.","family":"Dicianno","sequence":"additional","affiliation":[{"name":"Department of Physical Medicine and Rehabilitation, University of Pittsburgh School of Medicine, Pittsburgh, PA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Renee M.","family":"Turchi","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, St. Christopher\u2019s Hospital for Children, Philadelphia, PA, USA"},{"name":"Drexel University College of Medicine and Dornsife School of Public Health, Philadelphia, PA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","reference":[{"issue":"1 Pt 1","key":"10.3233\/PRM-210039_ref1","first-page":"184","article-title":"The Medical Home","volume":"110","author":"Medical Home Initiatives for Children with Special Needs Project Advisory Committee, American Academy of Pediatrics","year":"2002","journal-title":"Pediatrics"},{"issue":"5","key":"10.3233\/PRM-210039_ref2","doi-asserted-by":"publisher","first-page":"e1451","DOI":"10.1542\/peds.2014-0318","article-title":"Patient- and Family-Centered Care Coordination: A Framework for Integrating Care for Children and Youth Across Multiple Systems","volume":"133","author":"Council on Children with Disabilities and Medical Home Implementation Project Advisory Committee","year":"2014","journal-title":"Pediatrics"},{"issue":"4","key":"10.3233\/PRM-210039_ref5","doi-asserted-by":"publisher","first-page":"529","DOI":"10.1016\/j.apmr.2009.11.023","article-title":"Hospitalizations of Adults with Spina Bifida and Congenital Spinal Cord Anomalies","volume":"91","author":"Dicianno","year":"2010","journal-title":"Arch Phys Med Rehabil"},{"issue":"2","key":"10.3233\/PRM-210039_ref6","doi-asserted-by":"publisher","first-page":"100833","DOI":"10.1016\/j.dhjo.2019.100833","article-title":"Survey of U. 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