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Health Care Transition

Definition from the National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives (NCC), updated 2013:

(Created by David N. Entwistle, Psy.D. and Susan E. Waisbren, PhD.; vetted by National Coordinating Center Transition Work Group)
Transition is an ongoing, collaborative process
 that involves preparing for, facilitating, and adjusting to a shift 
from pediatric-centered healthcare to adult-centered healthcare.

This definition emphasizes collaboration in which healthcare professionals support young people and their families in recognizing the benefits and process of moving from pediatric-centered to adult-centered healthcare, encompassing medical care, educational/vocational adjustments, and social adjustment.  Medically, healthcare transition does not always mean transfer of care, but rather a shift in how care is provided.

  • Young people need to gradually assume more responsibility for their healthcare choices and treatment.
  • Families need to negotiate developmental issues as the young person gains independence from parents.
  • Assistance may still be required but may come from roommates, friends, spouses or home health aides.

Successful transition requires conversations with the young person and the family in a developmentally appropriate and culturally sensitive manner. Transition planning must also address educational and vocational plans, taking into account the ability of individuals to exercise independence medically and in terms of their ability to manage finances and activities of daily living. 

  • Individuals should be encouraged and supported in their educational and occupational pursuits and in obtaining accommodations for their medical needs, as appropriate.  
  • Individuals who have cognitive limitations and/or difficulties meeting self-care needs should be supported to obtain long-term planning about living situations, financial support and legal guardianship, as needed.

Socially, healthcare transition involves coming to terms with issues related to friendships, dating, sex, reproduction, and life expectancy, among others. Moreover, parents and healthcare providers need to recognize the age-appropriate task of young people to establish an identity apart from the diagnosis.

  • Providers need to be cognizant that young people may engage in exploration and risk taking before accepting new responsibilities and commitments. 
  • Therefore, the goal for healthcare providers is to establish a safety net and support system, as well as uninterrupted, comprehensive, culturally sensitive, and coordinated care.