Abstract Details

Title Health Care Transition and Longitudinal Care for Adolescents and Young Adults with Hydrocephalus

Topic Child Neurology and Developmental Neurology

Presentation(s) P5 - Poster Session 5 (5:30 PM-6:30 PM)

Poster/Presentation
Number 7-047

Objective To identify the barriers and best practices for health care transition (HCT) for youth with hydrocephalus.

Background Children with hydrocephalus need care beyond adolescence, but pediatric hospitals and neurosurgeons often cannot provide these services. A significant gap in health care services for HCT exists for youth with hydrocephalus. The Hydrocephalus Association (HA) convened a Transition Summit in Seattle, Washington, February 17-18, 2017.

Design/Methods Summit Organization: The HA identified concerns from youth and family focus groups. In plenary sessions and breakout groups, a wide range of stakeholders identified priorities and recommendations.

Results

Barriers to effective HCT include difficulty finding adult neurosurgeons to care for youth with hydrocephalus; unfamiliarity of neurologists, primary care physicians, and other health care professionals with the care of adults with hydrocephalus; insufficient infrastructure to provide effective HCT for youth, and longitudinal care for adults with hydrocephalus; and inadequate compensation for health care services.

Best practices identified include the National Health Care Transition Center “Six Core Elements of Health Care Transition 2.0”; development of hydrocephalus specific transition programs, or incorporation of hydrocephalus into existing general HCT programs; and development of centers for longitudinal care of adults with hydrocephalus.

Conclusions The lack of formal HCT and longitudinal care for youth with hydrocephalus is a significant health care services problem in the U.S., Canada, and worldwide. Recommendations of the Transition Summit include 1) actions by hospitals, health systems, and practices to meet local community needs to improve processes and infrastructure for HCT services and longitudinal care; and 2) actions by professional societies in adult and pediatric neurosurgery and neurology to meet national needs to improve processes and infrastructure for HCT services; to improve training in medical and surgical management of hydrocephalus, and in HCT and longitudinal care; and to demonstrate the outcomes and effectiveness of HCT and longitudinal care by promoting research funding.

Authors/Disclosures
Michael A. Williams, MD, FAAN (University of Washington School of Medicine) PRESENTER	Dr. Williams has received personal compensation in the range of $0-$499 for serving as an officer or member of the Board of Directors for the Hydrocephalus Association, a not-for-profit patient advocacay organization. The institution of Dr. Williams has received research support from NASA. The institution of Dr. Williams has received research support from Translational Research Insitute for Space Health (TRISH). The institution of Dr. Williams has received research support from NINDS.
	No disclosure on file
	No disclosure on file
	No disclosure on file
David Wood, PhD (Chelsea Therapeutics)	No disclosure on file
Mark Hamilton, MD (Foothills Hospital, Dept of Neurosurgery)	Dr. Hamilton has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Integra International. Dr. Hamilton has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Springer Nature. The institution of Dr. Hamilton has received research support from Hydrocephalus Association. The institution of Dr. Hamilton has received research support from NIH. The institution of Dr. Hamilton has received research support from Alberta Innovates.

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