The field of health care transition is constantly expanding and improving. Listed below are resources related to transition research and policy. In the coming months, we will be adding resources on payment. We recognize that this is not an exhaustive list, but rather a selection of important work related to health care transition. To submit new or updated resources, please contact info@GotTransition.org. For more information about transition research, the Health Care Transition Research Consortium has a repository of transition publications and presentations.
United States Transition Performance
“Current Status of Transition Preparation Among Youth With Special Needs in the United States”
From the 2009-2010 National Survey of Children with Special Health Care Needs (NS-CSHCN)
“Planning for Health Care Transitions: Results From the 2005–2006 National Survey of Children With Special Health Care Needs”
From the 2005-2006 NS-CSHCN
“Transition Planning for Youth With Special Health Care Needs: Results From the National Survey of Children With Special Health Care Needs”
From the 2001 NS-CSHCN
Six Core Elements Publications
Transitioning Wisely: Improving the Connection from Pediatric to Adult Health Care
Perspectives article that examines the literature related to transition to adult care for youth with rheumatic conditions and highlights resources for practitioners to improve the transition process including a new initiative on transition that the American College of Rheumatology is collaborating with the American College of Physicians (ACP) Council on Subspecialty Societies (CSS).
Integrating an EMR-based Transition Planning Tool for CYSHCN at a Children's Hospital: A Quality Improvement Project to Increase Provider Use and Satisfaction
Article describes EMR-based health care transition planning that addresses most of the Six Core Elements
Incorporating the Six Core Elements of Health Care Transition Into a Medicaid Managed Care Plan: Lessons Learned From a Pilot Project
Article describes results and lessons learned from a first-of-its-kind pilot project incorporating the Six Core Elements in a DC-based Medicaid managed care plan.
Integrating Young Adults with Intellectual and Developmental Disabilities into Your Practice: Tips for Adult Health Care Providers
Tip sheet with comprehensive steps to help adult health care providers successfully integrate young adults with intellectual and developmental disabilities into their practices.
Starting a Transition Improvement Process: Using the Six Core Elements of Health Care Transition 2.0
Suggested initial steps to help start or improve a transition process for youth transitioning to adult care. They are intended for use in pediatric, family medicine, med-peds, and internal medicine practices (both primary care and specialty practices), and health systems.
“Pediatric to Adult Transition: A Quality Improvement Model for Primary Care”
Article examines the results of implementing the Six Core Elements in pediatric and adult practices in a Washington, DC transition learning collaborative.
“The Promise and Potential of Adolescent Engagement in Health”
Editorial discusses the transition readiness assessment tool developed by Got Transition
“Adolescent Health Care Transition in Transition”
Commentary discusses the importance of the Six Core Elements in transforming transition services.
“A Primary Care Quality Improvement Approach to Health Care Transition”
Article describes clinical approach for implementing the Six Core Elements in a Washington DC transition learning collaborative.
“Using the Six Core Elements of Health Care Transition in Medicaid Managed Care”
A "Promising Practice" of the Association for Maternal and Child Health Program (AMCHP) Innovation Station that examines a Got Transition-led transition pilot project in a DC-based managed care plan.
Got Transition Newsletters
- Health Care Transition News - April 2017 [PDF]
- Health Care Transition News - October 2016 [PDF]
- Health Care Transition News - June 2016 [PDF]
- Health Care Transition News - February 2016 [PDF]
- Health Care Transition News - September 2015 [PDF]
- Health Care Transition News - March 2015 [PDF]
Methodology used in comparative studies assessing programmes of transition from paediatrics to adult care programmes: a systematic review
A systematic review to explore the methodologies employed in studies assessing transition of care interventions, with the aim of defining goals for the improvement of future studies.
Preventing Youth from Falling Through the Cracks Between Child/Adolescent and Adult Mental Health Services: A Systematic Review of Models of Care
A systematic review that aims to (1) identify and compare models of care that may be used to facilitate the transition from child and adolescent mental health services to adult mental health services; and (2) discuss trends and implications to inform future research and practice.
Measurable Outcomes After Transfer From Pediatric to Adult Providers in Youth With Chronic Illness
A review aimed to identify measurable patient-level outcomes for transitioning youth with chronic illness from pediatric to adult care.
Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences
A systematic review aimed to understand how parents view and experience their role as their child with a long-term physical health condition transitions to adulthood and adult healthcare services.
Transition of care for adolescents from paediatric services to adult health services
A systematic review that evaluates the effectiveness of interventions designed to improve the transition of care for adolescents from paediatric to adult health services.
Living a normal life in an extraordinary way: A systematic review investigating experiences of families of young people's transition into adulthood when affected by a genetic and chronic childhood con
A systematic review that explores the experiences of children with chronic conditions and their parents and siblings
Primary care interventions to improve transition of youth with chronic health conditions from paediatric to adult healthcare: a systematic review
A systematic review that determines effective interventions to improve primary care provider involvement in transitioning youth with chronic conditions from pediatric to adult care.
Improving the transition between paediatric and adult healthcare: a systematic review
A systematic review of the evidence of effectiveness of transitional care programmes in young people aged 11–25 with chronic illness (physical or mental) or disability, and identify their successful components.
Systematic Review: Health Care Transition Practice Service Models
A systematic review that investigates the state of the science of health care transition (HCT) service models as described in quantitative investigations.
Integrative Review: Delivery of Healthcare Services to Adolescents and Young Adults During and After Foster Care
An integrative review that summarizes the delivery of healthcare services to adolescents while in foster care and to young adults after they exit foster care.
Transition from Childhood to Adulthood in Coeliac Disease: the Prague Consensus Report
A systematic review of literature and consensus report on the transition from childhood to adulthood of adolescents/young adults with coeliac disease (CD).
Effectiveness of Health System Services and Programs for Youth to Adult Transitions in Mental Health Care: A Systematic Review of Academic Literature
A systematic review that assesses the peer reviewed evidence on services/programs aimed at addressing youth to adult transitions in mental health services
A Scoping Review of Evaluated Interventions Addressing Developmental Transitions for Youth with Mental Health Disorders
A scoping review that examines the peer-reviewed research that describes evaluated interventions addressing developmental transitions for youth with mental health disorders
Transitioning the Adolescent with IBD from Pediatric to Adult Care: A Review of the Literature
A systematic review on the current state of knowledge regarding the transition from pediatric to adult care in IBD.
Improving the Transition from Pediatric to Adult Diabetes Healthcare: A Literature Review
A systematic literature review of papers that evaluated transition care programs for emerging adults with diabetes.
Transition to Adult Mental Health Services for Young People With ADHD
A systematic review of survey responses investigating the care management and continuity from child to adult mental health service for young adults with ADHD.
Systematic Review of the Impact of Transition Interventions for Adolescents With Chronic Illness on Transfer From Pediatric to Adult Healthcare
A systematic review of the effect of transition interventions on transfer to adult health care.
Uncharted Territory: Systematic Review of Providers' Roles, Understanding, and Views Pertaining to Health Care Transition
A systematic review of literature on providers' roles and views on pediatric to adult transition.
Systematic Review of Medical Home Models to Promote Transition to Primary Adult Health Care for Adolescents Living with Autism Spectrum Disorder
An evidence review of articles on transitioning adolescents and young adults, ages 12-25, with autism to adult health care within a medical home.
Transition to Adult Medical Care for Adolescents with Epilepsy
A systematic literature review of issues and effective models to transition adolescents with epilepsy into adulthood.
Transition to Adult Services for Young People with Mental Health Needs: A Systematic Review
A systematic review of articles that evaluate the transition from child and adolescent to adult mental health services for young people aged 16-21 years.
Experiences and Outcomes of Transition from Pediatric to Adult Health Care Services for Young People with Congenital Heart Disease: A Systematic Review
A review of empirical literature on transition to adult health care for adolescents and young adults with congenital heart disease, aged 17-36.
The Experiences and Impact of Transition from Child to Adult Healthcare Services for Young People with Type 1 Diabetes: A Systematic Review
A systematic review of the transition process for young people (aged 16-36) from pediatric to adult health care.
Measuring the ‘Triple Aim” in Transition Care: A Systematic Review
Article summarizes transition measures used to evaluate transition impact in terms of experience of care, population health, and costs of care.
Health Care Transitions Research Network (HCT-RN) for Autism Spectrum Disorders' Literature on Transition
A comprehensive list of articles focused on transition for to adulthood for youth with autism spectrum disorder.
Evidence of Transition Planning Impact on Population Health, Patient Experience, and Cost of Care
Summary of evidence on transition's impact related to medical complications, adherence to care, patient experience, continuity of care, patient-reported outcomes, and costs of care.
Agency for Healthcare Research and Quality (AHRQ) Technical Brief on Transition Care for Children with Special Health Needs
Technical brief on state of transition practice and current literature to provide a framework for future research.
Literature Reviews Related to Health Care Transition
Several papers review the published literature on health care transition needs and services.
Validated Transition Tools
Validation of the Argentinian Spanish version of the Transition Readiness Assessment Questionnaire for adolescents with chronic conditions
The goal of this study was to validate the Argentinian Spanish version of the Transition Readiness Assessment Questionnaire (TRAQ) 5.0 tool in adolescents and young adults with chronic conditions.
- Boston Children’s Hospital's Adolescent Assessment of Preparation for Transition (ADAPT) survey
- British Columbia Children’s Hospital’s “Am I ON TRAC” for Adult Care Questionnaire
- JaxHATS Transition Readiness Assessment Questionnaire (TRAQ)
- UNC TR(x)ANSITION Scale for Adolescents and Young Adults [PDF]
- Self-Management and Transition Readiness Assessment: Development, Reliability, and Factor Structure of the STARx Questionnaire
- UNC STARx Transition Readiness Questionnaire
Professional Organization Statements on Transition
2011 AAP/AAFP/ACP Clinical Report on Transition
"Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home"
2002 AAP/AAFP/ACP Statement
"A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs"
1993 Society for Adolescent Medicine Position Paper
"Transition from Child-Centered to Adult Health-Care Systems for Adolescents with Chronic Conditions"
Got Transition Practice Measurement Tools
Got Transition has developed two different measurement approaches (qualitative -- "Current Assessment of Health Care Transition Activities" -- and quantitative -- "Health Care Transition Process Measurement Tool") to assess the extent to which the Six Core Elements of Health Care Transition 2.0 are being incorporated into clinical processes. Both measurement approaches are available for the following settings:
- Transitioning Youth to Adult Health Care Providers
- Transitioning to an Adult Approach to Health Care without Changing Providers
- Integrating Young Adults into Adult Health Care
Got Transition Feedback Surveys
Got Transition has developed youth/young adult and parent transition feedback surveys for use after the transition process is complete. These feedback surveys are available for the following settings:
- Transitioning Youth to Adult Health Care Providers
- Transitioning to an Adult Approach to Health Care without Changing Providers
- Integrating Young Adults into Adult Health Care
Maternal Child Health Bureau: National Survey for Children with Special Health Care Needs
The 2009-2010 National Survey for Children with Special Health Care Needs asks a series of 4 questions to assess transition performance.
National Quality Forum
The NQF endorses the Maternal Child Health Bureau's transition measures for youth with special needs.
National Committee for Quality Assurance’s 2014 Medical Home Standards
The 2014 NCQA Patient-Centered Medical Home Standards incorporate many elements that pertain to transition from pediatric to adult care.
Meaningful Use Measures for Transitions of Care
Certification and standards criteria for EHR technology on transition from one setting of care to another.
Insurance and Payment
The Maternal Child Health Bureau’s national resource center of health insurance coverage for children with special health care needs.
- Centers for Medicare and Medicaid Services
Implementing the Affordable Care Act: How Much Will it Help Vulnerable Adolescents and Young Adults?
A presentation, policy brief, and fact sheet on how the ACA impacts vulnerable youth and young adults prepared by The National Adolescent and Young Adult Information Center.
States Offer Privacy Protections To Young Adults On Their Parents’ Health Plan
A report by Kaiser Health News that looks at reforms of state laws and insurer billing practices to prevent breeches of confidentiality.
2017 Coding and Reimbursement Tip Sheet for Transition from Pediatric to Adult Health Care
Tip sheet of transition-related CPT codes and corresponding Medicare fees, effective 2017. This practice resource, prepared by Got Transition and the American Academy of Pediatrics, also includes a set of seven clinical vignettes with recommended CPT and ICD-10 codes.
HealthCare.gov Young Adult FAQs
The government’s insurance marketplace with information about enrolling young adults in insurance plans.
Federal Transition Initiatives
- Maternal Child Health Bureau
- Got Transition
- MCH Health Care Transitions Research Network (HCT-RN) for Youth and Young Adults with Autism Spectrum Disorders (ASD)
- Substance Abuse and Mental Health Services Administration
- Emerging Adults Initiative
- Transition to Independence Process
- Pathways Research and Training Center
- Now Is The Time: Health Transition grant program
- Transitions RTC: Transition to Employment for Youth and Young Adults with Serious Mental Health Conditions
- Administration for Children and Families
- Child Welfare Information Gateway
- John H. Chafee Foster Care Independence Program
- National Resource Center for Youth Development
- National Youth in Transition Database
- Department of Labor's Office of Disability Employment Policy
- From School to Adulthood and the World of Work
- Youth Development and Leadserhip
- Health/Employment Transition Alliance
- The 2020 Federal Youth Transition Plan: A Federal Interagency Strategy [PDF]
State Transition Information
Transition to Adult Health Care and State Title V Program Directions: A Review of 2017 Block Grant Applications
Report analyzes FY 2017 State Title Block Grant Applications and presents new information about state Title V transition strategies and evidence-informed measures as well as examples of innovative transition strategies.
State Title V Health Care Transition Performance Objectives and Strategies: Current Snapshot and Suggestions
Aligning National Title V Performance Measures on Transition, Medical Home, Preventive Care, and Insurance: Suggested Strategies for States
Report offers strategies to state Title V agencies and their partners on linking performance improvements and innovations for transition from pediatric to adult health care with medical home, adolescent well care, well care for women, and adequate health insurance.
State Tables from the 2009/2010 National Survey of Children with Special Health Care Needs
These tables contain state data obtained from the 2009-2010 National Survey of Children with Special Health Care Needs and the 2010 Current Population Survey.
- State Transition Websites
- Alaska [PDF]
- District of Columbia
- New Hampshire
- New Jersey [PDF]
- New Mexico
- New York
- North Carolina
- North Dakota
- Rhode Island
- South Dakota