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New Report: "Transitioning to Adult Care" by Children's Hospital of Philadelphia

The transition from pediatric to adult health care systems can be especially challenging for children with special health care needs, according to the latest Evidence in Action Brief from researchers at the PolicyLab at Children's Hospital of Philadelphia (CHOP).

What they learned: PolicyLab's surveys and interviews conducted in 2011, 2014, and 2016 all point to the same challenges in successfully transitioning to adult care, including a lack of resources for multidisciplinary care, problematic workflows for patients and families, and unaccommodating physical spaces.

PolicyLab at CHOP traced their work back to 2005, when the Maternal and Child Health Bureau at HRSA launched an effort to create national standards for pediatric to adult care transitions. This resulted in six principles to guide the transition process, called Got Transition.

The researchers learned that despite the existence of these national standards, "these principles have proved difficult to implement, and many patients and providers report ongoing barriers to successfully navigating the transition process."

Recommendations to overcoming barriers:

  1. Providers and practices should start early in preparing children/proxies for adult medical decision-making, invest in tools for bidirectional communication among providers, follow existing guidelines and standards for transitions, and work to improve care coordination.
  2. Health systems can reduce silos between pediatric and adult providers, designate teams dedicated to children with medical complexity, invest in transitional care technologies, and work with social services to support medical and non-medical decision-making among youth.
  3. Policymakers are encouraged to empower state Medicaid directors to prevent predictable gaps in care for Medicaid beneficiaries, test innovative transition payment models, and shift care coordination and care management to payers.

CHOP also identified four models of care with high-quality transition processes:

  • CHOP's own Multidisciplinary Intervention Navigation Team: Team-based complex care is delivered by youth community health workers, social workers, nurse practitioners, and physicians. More at >
  • Nemours A.I. DuPont’s Transition of Care Program: A senior pediatrician and social work coordinator provide families with written, comprehensive Shared Plans of Care. More at >
  • Center For Youth & Adults With Conditions Of Childhood at Indiana University/Riley Hospital for Children: A multidisciplinary team of social workers, nurses, and doctors works with the patient and family to develop a transition plan, and care coordinators assist in carrying out these plans. More at >
  • Transition Medicine Clinic at Baylor College of Medicine: A centralized medical home model designed to help young people with special needs and medical complexity access adult medical care and navigate the adult health care system. More at >
Full Report: (PDF)

Cited Work: Steinway C, Gable JL, Jan S., and MINT. Transitioning to Adult Care: Supporting Youth with Special Health Care Needs. PolicyLab at Children’s Hospital of Philadelphia; 2017.