Published online October 19, 2009
PEDIATRICS Vol. 124 No. 5 November 2009, pp. 1431-1437 (doi:10.1542/peds.2008-3834)
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REVIEW ARTICLE

Who Will Care for Me Next? Transitioning to Adulthood With Hydrocephalus

Tamara D. Simon, MD, MSPHa,b, Sara Lamb, MDb,c, Nancy A. Murphy, MDa,b, Bonnie Hom, MPH(c)d, Marion L. Walker, MDb,e and Edward B. Clark, MDa,b

Departments of a Pediatrics
c Medicine
e Neurosurgery, University of Utah, Salt Lake City, Utah
b Primary Children's Medical Center, Salt Lake City, Utah
d Department of Health Education, San Francisco State University, San Francisco, California

OBJECTIVES: Hydrocephalus is a prototypical chronic condition that follows children into adulthood. The objectives of this study were to (1) review how the health care needs of young adults with hydrocephalus are not being met, (2) estimate the numbers of adults with childhood-onset hydrocephalus, (3) describe a novel program to provide care for young adults with hydrocephalus and other chronic pediatric conditions, and (4) propose national strategies to promote successful hydrocephalus transition care.

RESULTS: Adults with hydrocephalus need continuous access to expert surgical and medical providers. Existing care models fail to meet this need. The number of young adults who have hydrocephalus, are aged 18 to 35 and need treatment in the United States is predicted to exceed 40000 annually within the next 2 decades. We are developing integrated teams of pediatric and adult medical and surgical specialists to provide continuous, coordinated, comprehensive care for individuals with hydrocephalus in a pediatric setting. This setting will train our future physician workforce on optimal transition care. Coordinated national efforts are also needed.

CONCLUSIONS: Providers need to implement appropriate management and transition care for individuals with hydrocephalus. We must work at local and national levels to transform the care model, improve the quality of health care delivery, and improve outcomes for young adults with hydrocephalus.

Key Words: hydrocephalus • health transition • medical education • advocacy

Abbreviations: PCMC—Primary Children's Medical Center • IH—Intermountain Healthcare

Accepted Jun 10, 2009.


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