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Who will care for me next? Transitioning to adulthood with hydrocephalus

Tamara D Simon1, Sara Lamb, Nancy A Murphy

  • 1Department of Pediatrics, University of Utah, Salt Lake City, Utah 84113, USA. tamara.simon@hsc.utah.edu

Pediatrics
|October 21, 2009
PubMed

Insights

Young adults with hydrocephalus face unmet healthcare needs due to inadequate transition care. A new integrated care model and national strategies are proposed to improve lifelong management for this chronic condition.

Area of Science:

  • Pediatric Neurology
  • Chronic Condition Management
  • Healthcare Transition

Background:

  • Hydrocephalus is a chronic neurological condition requiring lifelong management.
  • Existing healthcare models inadequately address the transition of care for young adults with hydrocephalus.
  • Significant numbers of adults with childhood-onset hydrocephalus require specialized ongoing care.

Purpose of the Study:

  • To review unmet healthcare needs of young adults with hydrocephalus.
  • To estimate the prevalence of adults with childhood-onset hydrocephalus.
  • To describe a novel care program and propose national strategies for hydrocephalus transition care.

Main Methods:

  • Literature review on healthcare needs.
  • Prevalence estimation for young adults (18-35) with hydrocephalus.
  • Description of an integrated pediatric and adult specialist care model.
  • Proposal of national transition care strategies.

Main Results:

  • Current care models fail to meet the continuous expert provider needs of adults with hydrocephalus.
  • Over 40,000 young adults (aged 18-35) in the US are predicted to require hydrocephalus treatment annually within 20 years.
  • An integrated care model in a pediatric setting is being developed to provide coordinated, comprehensive care and train future physicians.

Conclusions:

  • Appropriate management and transition care are crucial for individuals with hydrocephalus.
  • Transforming care models at local and national levels is necessary.
  • Improving healthcare delivery quality will enhance outcomes for young adults with hydrocephalus.
Abstract

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