Improving Health Care Transition for Youth With Special Needs
Condition: Health Care Transition; Care Coordination
Study type: Interventional

Summary: 
      Special opportunities exist in vulnerable populations with chronic conditions to better
      understand what life course factors can facilitate attainment of optimal health and
      development. One such opportunity arises in the life of an adolescent or young adult when
      they transition their care from pediatric to adult health providers and systems, referred to
      as "health care transition". Experts generally agree that health care transition is often
      unsuccessful and associated with a variety of adverse outcomes. Adverse outcomes of
      unsuccessful health care transition include foregone or delayed medical care and having no
      identified adult medical home after leaving pediatrics. This foregone and delayed care can
      result in potentially preventable costly utilization of hospital emergency and inpatient
      services. Particularly concerning is increasing evidence that for some youth, transition from
      pediatric to adult medical care is a high-risk period for mortality. In addition to the
      adverse effects on individuals, unsuccessful health care transition also likely has economic
      consequences, particularly given that the majority of health care spending is already
      allotted to individuals with chronic conditions. These problems are even greater for low
      income and minority youth, with the District of Columbia having the highest level of unmet
      transition needs in the U.S.
    

Detailed description: 
      Special opportunities exist in vulnerable populations with chronic conditions to better
      understand what life course factors can facilitate attainment of optimal health and
      development. One such opportunity arises in the life of an adolescent or young adult when
      they transition their care from pediatric to adult health providers and systems, referred to
      as "health care transition". Experts generally agree that health care transition is often
      unsuccessful and associated with a variety of adverse outcomes. Adverse outcomes of
      unsuccessful health care transition include foregone or delayed medical care and having no
      identified adult medical home after leaving pediatrics. This foregone and delayed care can
      result in potentially preventable costly utilization of hospital emergency and inpatient
      services. Particularly concerning is increasing evidence that for some youth, transition from
      pediatric to adult medical care is a high-risk period for mortality. In addition to the
      adverse effects on individuals, unsuccessful health care transition also likely has economic
      consequences, particularly given that the majority of health care spending is already
      allotted to individuals with chronic conditions. These problems are even greater for low
      income and minority youth, with the District of Columbia having the highest level of unmet
      transition needs in the U.S.

      In light of these facts, it becomes urgent to implement recommended standards for health care
      transition and evaluate their impact on transition outcomes. This research quantifies the
      impact of recommended health care transition practices using a randomized trial design and
      analysis following the intention-to-treat paradigm. The investigators do so by comparing
      aspects of 1) health care transition effectiveness (i.e., care coordination, timing, and
      services received); 2) experience of care (i.e., satisfaction and quality of chronic illness
      care); and 3) health care utilization in a population of 18-22 year-old African-American
      adolescents with special health care needs, receiving primary care in an urban academic
      adolescent medicine practice, using standardized outcome measures. Half of participants
      received usual care enhanced by written transition information, and half received a health
      care transition intervention modeled on the joint American Academy of Pediatrics, the
      American Academy of Family Physicians, and the American College of Physicians best practices
      report, released July 2011 that identified six recommended core components for transition
      programs. These include both practice based components (i.e. written transition policy,
      transitioning youth registry, and transfer of care) and patient level components (i.e.
      transition planning and completion). This report makes available an important standard for
      establishing transition practices but also demands careful evaluation.
    

Intervention name(s): Health Care Transition Care Coordination
Intervention type(s): Behavioral
Intervention description(s): These services included 1) a face-to-face systematic review of the readiness assessment with the participant/caregiver 2) a status assessment of ongoing healthcare transition planning and preparation; 3) monthly phone calls with the participant/caregiver to update and fill gaps in the healthcare transition action plan.
Allocation: Randomized
Intervention model: Parallel Assignment
Masking: Single (Participant)
Primary purpose: Health Services Research
Keywords: Adolescent Health