Care Coordination Guidelines for the Care of People with Spina Bifida

Authors

Alexander Van Speybroeck, University of Southern California
Patricia Beierwaltes, Minnesota State University, MankatoFollow
Betsy Hopson, Children's Hospital of Alabama, Birmingham, AL
Suzanne McKee, Orlando Health Arnold Palmer Hospital for Children, Orlando, FL
Lisa Raman, Nursing Committee and Ecuational Initiatives, Worldwide Syringomyelia and Chiari Task Force, Spina Bifida Association Patient and Clinical Services, Lawrenceville, GA
Ravindra Rao, Loma Linda University Medical Center, Loma Linda, CA
Rebecca Sherlock, Boston Children's Hospital, Boston, MA

Document Type

Article

Publication Date

12-22-2020

Abstract

Care coordination is the deliberate organization of patient care activities between two or more participants (including the patient) involved in a person’s 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. 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. For this reason, the Spina Bifida Care Coordinator has the primary responsibility for overseeing the overall treatment plan for the individual with Spina Bifida. Care coordination includes communication with the primary care provider in a patient’s medical home. This article discusses the Spina Bifida Care Coordination Guideline from the 2018 Spina Bifida Association’s 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.

Department

School of Nursing

Print ISSN

1874-5393

Publication Title

Journal of Pediatric Rehabilitation Medicine

Recommended Citation

Van Speybroeck, A., Beierwaltes, P., Hopson, B., McKee, S., Raman, L., Rao, R., & Sherlock, R. (2020). Care coordination guidelines for the care of people with spina bifida, Journal of Pediatric Rehabilitation Medicine, 13, 499-511. https://doi.org/10.3233/PRM-200738

DOI

10.3233/PRM-200738

Link to Publisher Version (DOI)

https://doi.org/10.3233/PRM-200738

Publisher's Copyright and Source

Copyright © 2020 - IOS Press and the authors. All rights reserved.

This article is published online with Open Access and distributed under the terms of the Creative Commons Attribution Non-Commercial License (CC BY-NC 4.0).

This article was first published in Journal of Pediatric Rehabilitation Medicine, 13, 499-511. https://doi.org/10.3233/PRM-200738

Creative Commons License

This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License