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Review
. 2009 Nov;124(5):1431-7.
doi: 10.1542/peds.2008-3834. Epub 2009 Oct 19.

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

Tamara D Simon  1 , Sara Lamb, Nancy A Murphy, Bonnie Hom, Marion L Walker, Edward B Clark
Affiliations
Review

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

Tamara D Simon et al. Pediatrics. 2009 Nov.

Abstract

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.

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Figures

FIGURE 1
FIGURE 1
Current and projected numbers of patients with hydrocephalus, aged 18 to 35, treated in the United States. Dark bars indicate projections of numbers of patients based on the actual numbers treated at Intermountain Healthcare; lighter bars indicate future projections for young adults with hydrocephalus. Source data from Intermountain Healthcare.
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References

    1. Perrin JM, Bloom SR, Gortmaker SL. The increase of childhood chronic conditions in the United States. JAMA. 2007;297(24):2755–2759. - PubMed
    1. van der Lee JH, Mokkink LB, Grootenhuis MA, Heymans HS, Offringa M. Definitions and measurement of chronic health conditions in childhood: a systematic review. JAMA. 2007;297(24):2741–2751. - PubMed
    1. Blum RW. Transition to adult health care: setting the stage. J Adolesc Health. 1995;17(1):3–5. - PubMed
    1. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110(6 pt 2):1304–1306. - PubMed
    1. Lotstein DS, McPherson M, Strickland B, Newacheck PW. Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs. Pediatrics. 2005;115(6):1562–1568. - PubMed

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