{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,5]],"date-time":"2026-10-05T19:47:45Z","timestamp":1791229665992,"version":"4.1.0"},"reference-count":28,"publisher":"SAGE Publications","issue":"4","license":[{"start":{"date-parts":[[2020,12,22]],"date-time":"2020-12-22T00:00:00Z","timestamp":1608595200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["PRM"],"published-print":{"date-parts":[[2020,12,22]]},"abstract":"<jats:p>Care coordination is the deliberate organization of patient care activities between two or more participants (including the patient) involved in a person\u2019s care to facilitate the appropriate delivery of health care services. Organizing care involves the marshalling of personnel and other resources needed to carry out all required patient care activities. It is often managed by the exchange of information among participants responsible for different aspects of care\u00a0[1]. With an estimated 85% of individuals with Spina Bifida (SB) surviving to adulthood, SB specific care coordination guidelines are warranted. Care coordination (also described as case management services) is a process that links them to services and resources in a coordinated effort to maximize their potential by providing optimal health care. However, care can be complicated due to the medical complexities of the condition and the need for multidisciplinary care, as well as economic and sociocultural barriers. It is often a shared responsibility by the multidisciplinary Spina Bifida team\u00a0[2]. For this reason, the Spina Bifida Care Coordinator has the primary responsibility for overseeing the overall treatment plan for the individual with Spina Bifida[3]. Care coordination includes communication with the primary care provider in a patient\u2019s medical home. This article discusses the Spina Bifida Care Coordination Guideline from the 2018 Spina Bifida Association\u2019s Fourth Edition of the Guidelines for the Care of People with Spina Bifida and explores care coordination goals for different age groups as well as further research topics in SB care coordination.<\/jats:p>","DOI":"10.3233\/prm-200738","type":"journal-article","created":{"date-parts":[[2020,12,1]],"date-time":"2020-12-01T16:23:26Z","timestamp":1606839806000},"page":"499-511","source":"Crossref","is-referenced-by-count":17,"title":["Care coordination guidelines for the care of people with spina bifida"],"prefix":"10.1177","volume":"13","author":[{"given":"Alexander","family":"Van Speybroeck","sequence":"first","affiliation":[{"name":"Children\u2019s Hospital Los Angeles, University of Southern California, Los Angeles, CA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Patricia","family":"Beierwaltes","sequence":"additional","affiliation":[{"name":"Minnesota State University, Mankato, Mankato, MN, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Betsy","family":"Hopson","sequence":"additional","affiliation":[{"name":"Children\u2019s Hospital of Alabama, Birmingham, AL, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Suzanne","family":"McKee","sequence":"additional","affiliation":[{"name":"Orlando Health Arnold Palmer Hospital for Children, Orlando, FL, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lisa","family":"Raman","sequence":"additional","affiliation":[{"name":"Nursing Committee and Educational Initiatives, Worldwide Syringomyelia and Chiari Task Force, Lawrenceville, GA, USA"},{"name":"Spina Bifida Association, Patient and Clinical Services, Lawrenceville, GA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ravindra","family":"Rao","sequence":"additional","affiliation":[{"name":"Loma Linda University Medical Center, Loma Linda, CA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rebecca","family":"Sherlock","sequence":"additional","affiliation":[{"name":"Boston Children\u2019s Hospital, Boston, MA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","reference":[{"issue":"7","key":"10.3233\/PRM-200738_ref1","first-page":"1","article-title":"Quality Improvement Measurement of Outcomes for People With Disabilities: Closing the Quality Gap: Revisiting the State of the Science","volume":"208","author":"Butler","year":"2012","journal-title":"Evid Rep Technol Assess (Full Rep)."},{"issue":"1","key":"10.3233\/PRM-200738_ref2","doi-asserted-by":"publisher","first-page":"16","DOI":"10.1016\/j.pedhc.2010.06.003","article-title":"Care coordination in the spina bifida clinic setting: current practice and future directions","volume":"26","author":"Brustrom","year":"2012","journal-title":"J Pediatr Health Care"},{"issue":"1","key":"10.3233\/PRM-200738_ref3","first-page":"978","article-title":"Care Coordination: Integrating Health and Related Systems of Care for Children with Special Health Care Needs","volume":"104","author":"Ziring","year":"1999","journal-title":"Pediatrics."},{"issue":"3","key":"10.3233\/PRM-200738_ref4","doi-asserted-by":"crossref","first-page":"465","DOI":"10.1542\/peds.84.3.465","article-title":"Community physician\u2019s role in case management of children with chronic illnesses","volume":"84","author":"Liptak","year":"1989","journal-title":"Pediatrics."},{"issue":"4","key":"10.3233\/PRM-200738_ref5","doi-asserted-by":"publisher","first-page":"366","DOI":"10.1016\/j.acap.2015.10.009","article-title":"Medical Homes for Children With Special Health Care Needs: Primary Care or Subspecialty Service","volume":"16","author":"Van Cleave","year":"2016","journal-title":"Acad Pediatr"},{"key":"10.3233\/PRM-200738_ref6","doi-asserted-by":"crossref","unstructured":"Medical Home Initiatives for Children With Special Needs Project Advisory Committee. 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