Communities of Practice

Web Resources on Transition to Adult Care

This is a selected list of resources that the AST Pediatric Community of Practice Joint Transition Work Group considers helpful and user-friendly. This resource will be updated regulary.

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Transition Literature Database
Articles, Brochures, and Tools
Transition Programs
Hospital-Based Transition Programs 

TRANSITION LITERATURE DATABASE
http://www.ncbi.nlm.nih.gov/pubmed?cmd=historysearch&querykey=6

  • Transition Literature Database created by Parag Shah MD. Dr. Shah is the Chronic Illness Transition Team Medical Director for SAILS (Supporting Adolescents with Independent Life Skills) and a hospitalist physician who works primarily with children with chronic illness at the Lurie Children’s Hospital of Chicago. This database contains 657 citations in PubMed from 1967-2013.

ARTICLES, BROCHURES, and TOOLS
http://www.healthypeople.gov/2020/topicsobjectives2020/overview.aspx?topicid=2

  • Healthy People 2020. Contains a new section on Adolescent Health, Emerging Issues in Adolescent Health and an extensive reference list.

http://onlinedigeditions.com/allarticle/15191/125764/125764/allarticle.html

  • The September 2012 edition of the ASN’s Kidney News includes 10 articles by experts in transition including readiness for transition, adherence, insurance issues, young adult clinics and insurance gaps.

http://ajl.sagepub.com/content/5/1/85.full.pdf+html

  • Harris MA, Freeman KA, Duke D. Transitioning from Pediatric to Adult Health Care: Dropping Off the Face of the Earth. Am J Lifestyle Med. 2011;5(1):85-91.

http://pediatrics.aappublications.org/content/131/6/1090.full.pdf+html

  • McManus M, Pollack LR, Cooley WC et al. Current Status of Transition Preparation Among Youth With Special Needs in the United States. Pediatrics 2013 131:1090-1097

http://www.aap.org/en-us/about-the-aap/aap-press-room/pages/Helping-Adolescents-Transition-to-Adult-Health-Care.aspx

  • American Academy of Pediatrics. Helping Adolescents Transition to Adult Health Care; 6/27/2011

http://www.medicalhomeinfo.org/downloads/pdfs/FactsheetTransitioningAdolescents-McManus.pdf

  • This publication includes data from the 2008 American Academy of Pediatrics (AAP) Periodic Survey of Fellows. The barriers to transition are discussed and economic and non-economic factors are identified.
  • The article also presents options for improving pediatric practice training, financing of transition services, adult physician availability, and consumer and parent education.

http://jpepsy.oxfordjournals.org/content/suppl/2009/12/30/jsp128.DC1/jpepsy-2009-0036-File005.pdf

  • This is the validated Transition Readiness Assessment Questionnaire 3.0 (TRAQ) 3.0 developed by Sawicki et al (2011).

http://www.waisman.wisc.edu/cedd/products.php

  • This website lists a variety of educational tools about the transition process for adolescents and young adults with chronic illness. The publications are for health care professionals, patients and families and include: My Health Pocket Guide, Transition Skills Checklist, Transition Training Guide, Preparing for Life as an Adult, and The Workbook for Youth

http://www.mcf.gov.bc.ca/spec_needs/pdf/support_guide.pdf

  • The “Transition Planning for Youth with Special Needs: A Community Support Guide” was developed to provide community partners (school personnel, social workers, and community members) with useful information and practical tips for supporting successful transition planning for youth with special needs.

http://www.ncdhhs.gov/dph/wch/families/transitioningchildren.htm

  • Health Care Transition: A Youth Guide to Transition from Pediatric to Adult Health Care. Sponsored by the North Carolina Division of Public Health. Carolina Health and Transition Project (CHAT). Excellent brochure with an extensive list of references and resources.

http://pediatrics.aappublications.org/content/early/2011/06/23/peds.2011-0969.full.pdf

  • Statement from the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians. A new clinical report provides detailed guidance to pediatricians, family physicians, and internists to support all adolescents, including those with special health care needs, as they transition to an adult model of health care. 

http://onlinedigeditions.com/display_article.php?id=1173014

  • September 2012 edition of the ASN’s Kidney News

http://www.aap.org/en-us/about-the-aap/aap-press-room/pages/Helping-Adolescents-Transition-to-Adult-Health-Care.aspx

  • American Academy of Pediatrics. Helping Adolescents Transition to Adult Health Care 6/27/2011

http://ndep.nih.gov/transitions/

  • The National Diabetes Education Program. Transitions from Pediatric to Adult Health Care. 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. 

http://www.pamf.org/teen/health/transitionadultcare.html

  • Palo Alto Medical Foundation, Sutter Health Information on transition for adolescents and young adults. Has handouts on “Transition to Adult Care” and “My Health Online Enrollment

http://www.medscape.com/viewarticle/738852

  • Transitioning from Pediatric to Adult Health Care: Dropping Off the Face of the Earth Michael A. Harris, PhD, Kurt A. Freeman, PhD, Danny C. Duke, PhD Am J Lifestyle Med. 2011;5(1):85-91.

http://pediatrics.aappublications.org/content/131/6/1090.full.pdf+html

  • Margaret A. McManus, Lauren R. Pollack, W. Carl Cooley, Jeanne W. McAllister, Debra Lotstein, Bonnie Strickland, and Marie Y. Mann Current Status of Transition Preparation Among Youth With Special Needs in the United States Pediatrics 2013 131:1090-1097

https://www.luriechildrens.org/en-us/care-services/specialties-services/transitioning-to-adult-care/Pages/index.aspx

  • The Chronic Care Transition Team helps teenage patients ease into new surroundings with a transition program. Includes various resources for transition and other website, particularly in Illinois. Has a resource section that includes Transition Facts, Adult Healthcare Provider Resources, Insurance and Benefits Resources, Community Resources, Knowledge and Responsibility Resources.

http://www.ncbi.nlm.nih.gov/pubmed?cmd=historysearch&querykey=3

  • Transition Literature Database created by Parag Shah, MD. Dr. Shah is the Chronic Illness Transition Team Medical Director and a hospitalist physician who works primarily with children with chronic illness at the Lurie Children’s Hospital of Chicago. This database contains 657 citations in PubMed from 1967-2013.

http://www.healthypeople.gov/2020/topicsobjectives2020/overview.aspx?topicid=2

  • Healthy People 2020. Contains a new section on Adolescent Health, Emerging Issues in Adolescent Health, and an extensive reference list.

http://www.kosairchildrenshospital.com/bridgestransitionalcare
Kosair Children’s Hospital, Bridges Transitional Care Program for chronic conditions.

  • Resources include:
  • All about me: A section on basic health information, care schedule and nutrition notes Medical history: Procedure/treatment history, medications, vaccine records and family medical history
  • Care providers: Current physicians, preferred hospitals and other important care providers  Insurance and legal documents:
  • All information needed for insurance and secondary insurance coverage.
  • Contact information for guardians, details of special guardian approvals and power of attorney  
  • State resources: Guide to local and regional resources for patients with special health care needs  
  • Transition: Detailed guide of key developmental milestones and tips for ages birth to 21 years old

 http://depts.washington.edu/healthtr/9

  • Adolescent Health Transition Project

 http://iciz.coled.umn.edu/htm

  • National Transition Network

http://www.youthhood.org/youthhood/index.asp

  • A website for youth with disabilities to help them with transition planning.

http://www.hrtw.org/

  • Healthy and Ready to Work National Resource Center. A website with information on health care transition planning.

http://www.calstat.org/transitionGuide.htm

  • CalSTAT - A website for youth that provides information on transition planning.

http://www.chla.org/site/c.ipINKTOAJsG/b.8278947/k.59F/Adolescent_and_Young_Adult_Transition_Care.htm

  • Children’s Hospital of Los Angeles. Transition of Care – Adolescents and Young Adults

http://www.ncdhhs.gov/dph/wch/doc/lhd/CHAT/Youth_Guide_12-09.pdf

  • Health Care Transition: A Youth Guide to Transition from Pediatric to Adult Health Care. Sponsored by the North Carolina Division of Public Health. Carolina Health and Transition Project (CHAT). Excellent brochure with an extensive list of references and resources.

http://www.independentfutures.com/Default.aspx?tabid=264&gclid=CIOHjPua7bwCFW3NOgod1RwA4A

  • Center for Independent Futures. Full Life Future Planning is a facilitated process in which individuals, their families and other members of their support team work with a coach to create a picture for the individual’s future, develop a detailed action plan, and begin to take steps toward making that picture a reality. Includes a Full Life Planning Tool, Readiness Inventory and Independent Living Skills Toolkit

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TRANSITION PROGRAMS (Includes specific resources for transition)
http://www.gottransition.org/

  • An excellent site representing the National Health Care Transition Center. The aim of this center is to advance access to effective transition support from pediatric to adult health care for all youth, including those with special needs. The site has sections for health care professionals, families, youth, and health policy makers and includes transition tools, tips and other resources in each category.

http://depts.washington.edu/healthtr/

  • This website is a resource for teens and young adults with special health care needs, chronic illness, physical or developmental disabilities. It is a comprehensive website, with links to many facets of transition. It contains resources for health care providers including toolkits, guides, a health history summary template that the youth prepares with the assistance of a parent and information regarding special education needs.

http://www.mahec.net/quality/chat.aspx?a=10

  • This is a comprehensive site developed by the North Carolina Division of Public Health, Children and Youth Branch. It contains many downloadable resources and toolkits for health care providers, youth with special health care needs, and families and also includes UNC Chapel Hill self and provider assessment tools for transition preparedness.

http://ndep.nih.gov/transitions/

  • The National Diabetes Education Program. Transitions from Pediatric to Adult Health Care
  • 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. 

http://www.youthhood.org/index.asp

  • A website for youth with disabilities to help them with transition planning. The Youthhood provides a holistic, web-based curriculum that teachers, community service providers, parents, and mentors can use with young adults to develop skills, increase knowledge, and implement a personal life plan that will help young adults achieve their goals. The Youthhood was developed by the National Center on Secondary Education and Transition (NCSET),headquartered at the Institute on Community Integration, within the College of Education and Human Development at the University of Minnesota. 

http://www.syntiro.org/hrtw/about_us/index.html

  • Healthy and Ready to Work National Resource Center. A website with information on health care transition planning through the Maternal and Child Health Bureau’s Division of Services for Children with Special Health Care Needs which has funded the development and demonstration of the model Healthy & Ready to Work (HRTW) state programs focused on of children and youth with special health care needs .

http://www.independentfutures.com/Default.aspx?tabid=264&gclid=CIOHjPua7bwCFW3NOgod1RwA4A

  • Center for Independent Futures. Full Life Future Planning is a facilitated process in which individuals, their families and other members of their support team work with a coach to create a picture for the individual’s future, develop a detailed action plan, and begin to take steps toward making that picture a reality. The website includes a Full Life Planning Tool, Readiness Inventory and an Independent Living Skills Toolkit.

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HOSPITAL-BASED TRANSITION PROGRAMS
http://www.chla.org/site/c.ipINKTOAJsG/b.8278947/k.59F/Adolescent_and_Young_Adult_Transition_Care.htm

  • Children’s Hospital of Los Angeles. Transition of Care – Adolescents and Young Adults

http://www.pamf.org/teen/health/transitionadultcare.html

  • Palo Alto Medical Foundation, Sutter Health. Information on transition for adolescents and young adults. This site contains handouts on “Transition to Adult Care” and “My Health Online Enrollment.”

http://www.kosairchildrenshospital.com/bridgestransitionalcare

  • Kosair Children’s Hospital, Bridges Transitional Care Program for chronic conditions.
  • Resources include: All about me: A section on basic health information, care schedule and nutrition notes; Medical history: Procedure/treatment history, medications, vaccine records and family medical history; Care providers: Current physicians, preferred hospitals and other important care providers;
  • Insurance and legal documents: All information needed for insurance and secondary insurance coverage; Contact information for guardians, details of special guardian approvals and power of attorney;
  • State resources: Guide to local and regional resources for patients with special health care needs; and
  • Transition: Detailed guide of key developmental milestones and tips for ages birth to 21 years old.

https://www.luriechildrens.org/en-us/care-services/specialties-services/transitioning-to-adult-care/programs/Pages/sails.aspx

  • Lurie Children's SAILS (Supporting Adolescents with Independent Life Skills) program offers a six-week program to teach teens to prepare for their future in work, college and managing their healthcare. There are also sessions for parents for more information and support. The Chronic Care Transition Team helps teenage patients ease into new surroundings with a transition program that includes various resources for transition and other website, particularly in Illinois. Includes a resources section with information on: Transition Facts, Adult Healthcare Provider Resources, Insurance and Benefits Resources, Community Resources, Knowledge and Responsibility Resources.

http://www.sickkids.ca/Good2Go/ and http://www.sickkids.on.ca/myhealthpassport/

  • A very good comprehensive website with multiple resources for adolescents transitioning from pediatric to adult care. The website includes an extensive list of resources including transitions tools, readiness checklists, health passport, and information for the adolescent and parents.

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