- The 2011 Clinical Report "Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home” from the AAP/ACP/AAFP was published in the July 2011 issue of Pediatrics and is available for download here. This clinical report provides a consensus on activities to support the implementation of health care transition planning for youth with and without special health care needs. It describes a series of activities designed to ensure that developmentally appropriate health care services are available to patients moving from adolescence to adulthood. The clinical report provides a clear time line, beginning at 12 years of age, to assist providers in implementing specific activities in transition: discussing the medical home transition policy; initiating a transition plan; reviewing/updating the transition plan; and implementing an adult care model. It also includes an algorithm that specifies the protocol for managing the transition process, helps providers implement the transition process, and provides a transition structure for patients and their families. The algorithm, described below, includes a branch with guidelines for transitioning youth with special health care needs who require chronic condition management.
- The Health Care Transition Planning Algorithm comes from the clinical report “Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home.” It outlines a step-by-step decision-making process for transitioning youth, beginning at age 12 and culminating in actual transition between the ages of 18 -21. It includes branches for youth with and without special health care needs and is available for download here.
- Transition Practice Tools from the National Health Care Transition Center to implement the Algorithm, the National Health Care Transition Center created the “Six Core Elements of Health Care Transition, based off the AAP/AAFP/ACP clinic report. There are six specific elements unique to pediatric and adult health care settings which involve different tools for transitioning youth. For pediatric health care settings, the six core elements are Transition Policy, Transition Youth Registry, Transition Preparation (readiness assessments), Transition Planning (action plans), Transition and Transfer of Care (Transfer of Care checklists), and Transition Completion. The elements for adult health care settings are Young Adult Privacy and Consent Policy, Young Adult Patient Registry, Transition Preparation (readiness assessments), Transition Planning (action plans), Transition and Transfer of Care (Transfer of Care checklists), and Transition Completion.
- Updated Six Core Elements of Health Care Transition 2.0: Comprehensive tool packages are available for three transition processes: 1) transitioning youth to adult health care providers, 2) transitioning youth to an adult approach to health care without changing providers and 3) integrating youth into adult health care. These packages include sample policies, registries, transition readiness/self-care assessments, condition fact sheets, medical summary and emergency care plans, transfer letters and checklists, young adult orientation material, care plans, feedback surveys and measurement approaches. Download the Six Core Elements and the supporting tool packages on the Got Transition web site here.
- Evaluation of Health Care Transition. There are two Medical Home Health Care Transition Indices, one for pediatric and the other for adult health care providers. These allow practices to assess their progress in implementing each of the six core elements of health care transition. The indices rank the level of implementation for a health care setting, from Level 1 (Basic) to Level 4 (Comprehensive).
- Medical Home Health Care Transition Index for Youth Up to Age 18 - This pediatric tool provides indicators related to the organization and delivery of health care transition support for youth up to age 18.
- Medical Home Health Care Transition Index for Adolescents and Young Adults Age 18 and older - This tool provides indicators related to the organization and delivery of health care transition support for youth age 18 and older.
- The Family Medical Home Index (also from Center for Medical Home Implementation) has been a valuable tool to evaluate the delivery of medical home care for several years.
Medical Summary Forms
- Health Care Transition Summary (2 page summary to carry at all times)
- H.I. Doc (portable summary from State of New York)
- My Health Passport (English) and Mi Pasaporte de Salud (Spanish); designed by Florida Center for Inclusive Communities, University of South Florida, for persons with developmental disabilities)
- Electronic Transition Information Form (HealthyTransitionsNY)
Condition Specific Checklists & Care Plans
- National Diabetes Education Program (NDEP) Transitioning from teenage years to adulthood can be stressful for teens with diabetes and their families. Teens and young adults need to assume more responsibility for diabetes self-management and make more independent judgments about their health care needs.
NDEP has assembled materials to help teens with diabetes make a smooth transition to adult health care. Families and health care professionals will also find these materials helpful.
NDEP has also developed a slide set with information about transitioning from pediatric to adult health care for health care professionals and community organizations to help explain and promote this resource. View or download promotional tools here.
The Pediatric to Adult Health Care Transition Planning Checklist, helps the health care provider, young adult, and family discuss and plan the change from pediatric to adult health care. While a variety of events may affect the actual timing when this change occurs, below is a suggested timeline and topics for review.
- Diabetes Care for Emerging Adults: Recommendations for Transition from Pediatric to Adult Diabetes Care Systems– A position statement of the American Diabetes Association.
- Organization for Autism Research use applied science to answer questions that parents, families, individuals with autism, teachers and caregivers confront daily.
Life Journey through Autism: A Guide for Transition to Adulthood is designed to give parents, teachers, and other education professionals an introduction to the transition to adulthood process.
- Stepping Up to Adult Care – A Health Care Provider’s Guide to Establishing a Transition Program for Pediatric Chronic Disease Populations. Funded by the Georgia Department of Public Health through the State Implementation Grants for Integrated Services for CSHCN (D70MC24121-02-00) and developed by Children’s Healthcare of Atlanta.
- The Sickle Cell Transition Curriculum (SCDTC) is a new reference for healthcare practitioners, youth/young adults, and parents that include practical age-specific guidelines for patients aged 12-25 with SCD.
For Condition Specific Checklists for Cerebral Palsy, Down Syndrome, HIV/AIDS, Hormone Deficiency, Intellectual Disability/Developmental Disability, Metabolic Conditions, Neuromuscular Disease, Pulmonary Disease, Solid Organ Transplantation, Spina Bifida click here.
Trainings, CME, Events
- Web CME. The lecture, "Sickle Cell Disease: New Insights into Management" was presented during the Georgia Academy of Family Physician's 2012 Annual Scientific Assembly. Funded by the Georgia Department of Public Health through the State Implementation Grants for Integrated Services for CSHCN (D70MC24121-02-00) and presented by Dr. James R. Eckman.
At the completion of this session, the participant will be able to:
- Understand the progress in sickle cell disease over the last century
- Learn the impact of newborn screening on prognosis
- Understand the contribution of hydroxyurea
- Understand the challenges of adult life and transitioning into the adult care system
- LIVE EVENT Congenital Heart Disease in the Adult: An International Symposium. June 10-13, 2014, Cincinnati. Relevant sessions include those on transition, some on pregnancy, and some on neurodevelopmental outcomes.
- MOC! Comprehensive Adolescent Health Screening. For pediatricians and family medicine physicians. Offered by the North Carolina Academy of Family Physicians.
- CME/MOC Illinois Chapter-American Academy of Pediatrics Transition Care Project. CME/MOC is available for pediatricians, family physicians, and internal medicine physicians.
- CME/CEU! "A Home Away from Home: College Health and the Patient-Centered Medical Home." American College Health Association. Valid through 12/2014.
- Webinar for college and university health professionals CME! "A 14-Year Old Girl with Hypoplastic Left Heart Syndrome Comes for a Well-Child Visit."
- From UW Health's Pediatric Pathways series includes an objective related to transitioning youth with congenital heart defects (CHD's). CME questions available.
- CME! "Care of the College Student." Article with CME credits available, from the American Academy of Family Physicians.
- CME! "Q&A: Managing Pediatric and Adolescent Patients With T2DM." From Penn State College of Medicine, some transition content. CME available.
- CNE! "Providing Transition Services to Children and Youth..."From University of Minnesota School of Nursing, web-based module on transition services for children and youth with special healthcare needs.
- CNE! "Preconception Counseling for Adolescent and Adult Women With Diabetes." Four self-paced modules from the University of Pittsburgh.
- CNE! "At the Crossroads: Cancer in Ages 15-39."
Free video series from the Nurse Oncology Education Program.
Georgia Resources for Children and Youth with Special Health Care Needs (Birth through 21) (A link to the Resource page on the CMS webpage is needed)
National Resources (This should also be linked to the ‘For Patients and Parents’ Section)
- Institute for Healthcare Improvement - offers a wide range of resources and teaching tools to help health care professionals lead effective improvement efforts, enhance clinical outcomes, and reduce costs.
- AAP/MCHB Building Your Medical Home Toolkit – supports the health care professional’s development and/or improvement of a pediatric medical home. It also prepares the provider to apply for and potentially meet the National Committee for Quality Assurance (NCQA) Patient Centered Medical Home (PCMH) recognition program requirements.
- Healthy and Ready to Work (HRTW) National Resource Center -this site focuses on understanding systems, access to quality health care, and increasing the involvement of youth. It also includes provider tools and resources needed to make more informed choices. The HRTW project has ended but the site will remain available.
- Got Transition – this website offered by the National Health Care Transition Center is funded by the federal government to provide health care transition resources and research to improve the health care transition process for youth with disabilities nationwide.
- Healthy Transitions New York – provides curriculum and tools to assist health care providers, youth and their families on to raise awareness about developmental disabilities, improve communication, and build effective partnerships during the transition process.
- Needy Meds – information on patient assistance programs
- Family Voices - Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through their national network, they provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care.
- Shared Care Plan- no cost, web-based tool to assist patients with organizing and recording health information.
- My Medical – comprehensive record-keeping app for personal medical information.
- Illinois Chapter American Academy of Pediatrics (ICAAP) Website – host of information and tools for transitioning youth from pediatric to adult care.
- Payment and Finance Section of the National Center for Medical Home Implementation – this website offers resources for physicians on how to advocate and negotiate for improved and appropriate payment for services provided by a medical home.
- AAP Pediatric Coding Newsletter Online – this American Academy of Pediatrics website offers a variety of coding resources for pediatricians
- AAP Coding Calculator – this AAP coding calculator is used for general comparative purposes for the reimbursements of Evaluation and Management codes.
- AAP EQIPP Medical Home for Pediatric Primary Care – This Education in Quality Improvement for Pediatric Practice series provides child health professionals with practical strategies for implementing medical home in practice.
- National Center for Medical Home Implementation
- National Transitions of Care Coalition (addresses the gaps that impact safety and quality of care for transitioning patients)
- The Catalyst Center is a national center dedicated to improving health care coverage and financing for Children and Youth with Special Health Care Needs (CYSHCN).
- Carolina’s Health and Transition (CHAT) Project (from North Carolina’s Mountain Area Health Education Center)