Tackling the Challenges of Transitioning from Pediatric to Adult Medical Care

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FeaturedImageAll too often our pediatric hydrocephalus patients experience difficulties in transitioning to adult care, leading to inability to find a medical provider, inadequate follow-up, bad experiences, and poor outcomes. This year the Hydrocephalus Association is tackling this critical issue within our community.

From February 17 – 18, 2017 in Seattle, WA, the Hydrocephalus Association will host the Hydrocephalus Association Transition Summit. The two-day workshop will discuss ways of improving the transition from pediatric to adult-centered medical care for patients with hydrocephalus. The workshop is by invitation only. We are very proud to have confirmed more than 50 experts in a wide range of relevant fields, from clinicians to public policy experts, together with parents and patients. The workshop will cover both “macro topics” that require systemic change and the coordinated efforts of healthcare professional societies, patient advocacy organizations, health systems, payers, and governmental agencies; and “micro topics” that can be addressed and coordinated at the local level through the adoption of best practices.

The Summit will lead to a white paper that will propose a national plan of action, with a set of measurable goals that can be reached within 5-10 years.

YOU CAN HELP! Have you faced challenges transitioning? These could be challenges faced finding appropriate supports in college, finding or keeping a job, with health insurance, finding new medical providers (neurosurgeon, neurologist, general practitioner, etc.), and/or qualifying for state or federal programs. We would love to hear from you! Please email jennifer@hydroassoc.org.

The Hydrocephalus Association would like to acknowledge the tremendous leadership of the Co-Chairs of the Hydrocephalus Association Steering Committee, Tessa van der Willigen, Member, HA’s Board of Directors, and Dr. Michael A. Williams, Professor of Neurology and Neurological Surgery, Adult & Transitional Hydrocephalus and CSF Disorders, University of Washington, Member, HA’s Board of Directors, Vice Chair, HA’s Medical Advisory Board and founding member of Adult Hydrocephalus Clinical Research Network (AHCRN), working closely with Jennifer Bechard, HA’s Education Manager.  Additionally, we’d like to extend our appreciation to the members of our “Hydrocephalus Transition Summitsteering committee:

Cathy Cartwright, MSN, PCNS, FAAN
Pediatric Clinical Nurse Specialist, Children’s Mercy Hospital, Kansas City, MO
Member, Hydrocephalus Association Medical Advisory Board

Mark Hamilton, MDCM, FRCSC, FAANS
Professor of Neurosurgery and Director Adult Hydrocephalus Program, University of Calgary
Member, Hydrocephalus Association Board of Directors
Member, Hydrocephalus Association Medical Advisory Board
Chairman of the Adult Hydrocephalus Clinical Research Network (AHCRN)

Patience White, MD, MA, FAAP, FACP
Co-Director, Got Transition: The Center for Health Care Transition Improvement

David Wood, MD, MPH
Chair, Department of Pediatrics, ETSU College of Medicine
Member, Hydrocephalus Association Medical Advisory Board

Their time, dedication, and guidance has made it possible to put together this impactful two day workshop.

Finally, this crucial workshop would not be possible without generous funding from the Theodore W. Batterman Family Foundation. Angela Batterman will be attending the Summit as one of our parent participants.

Theodore W. Batterman Family Foundation, Inc.

 

 

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