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Health Care Transition Guides for Helping Youth Transition from Pediatric to Adult Health Care

Authors: A collaboration (North Carolina Department of Health and Human Services, Healthy and Ready to Work, Mountain Area Health Education Center, the Center for Independent Living, and the Exceptional Children’s Assistance Center)


These booklets explain the information and other needs of youth with disabilities as they transition from the pediatric to adult system of healthcare. There are two versions of the booklet, one for healthcare providers/physicians and the other for parents and families. The provider’s edition presents the challenge early on:

“Health care transition, according to the Society for Adolescent Medicine, is the purposeful, planned movement of adolescents from pediatric to adult health care1. It is a “process” where the responsibility for managing health care shifts from the parent to the young adult. Health care transition is one aspect of the many transitions that occur in the movement from adolescence to adulthood. It is an active, multifaceted process that involves the medical, psychosocial, educational and vocational needs of youth. For those with special needs, transition can be especially challenging.”

Provider version

The version for providers is 39 pages long with an additional 66 pages of appendices. Here are the major section headings:
- Section 1 Health Care Transition

- Section 2 Transition and the Medical Home

- Section 3 The Role of the Medical Provider (including the roles of primary and subspecialty providers, and care coordination )

- Section 4 Transition Planning Toolkit

- Section 5 Transition and Reimbursement Issues

- Section 6 Cultural and Linguistic Competence

The version for providers adds four practical, and therefore useful appendices

- Appendix A: A PowerPoint presentation with post-test about the importance of and steps in supporting youth with disabilities in transitioning from the pediatric to adult healthcare model

- Appendix B: An overview of the steps necessary for healthcare organizations to make the transition from the pediatric to the adult healthcare system more smooth.

- Appendix C: A process for physicians to use in requesting continuing education credits for studying the transition from using the pediatric to the adult healthcare system.

- Appendix D: A “toolkit” with materials helpful to both physicians and their patients when moving through this transition. These include:

1. Core Knowledge and Skills for Pediatric Practices (from the Healthy & Ready To Work National Resource Center)

2. Provider Transition Checklist and Timelines

3. Transitions - Changing Roles for Youth (from the Healthy & Ready To Work National Resource Center)

4. Transitions - Changing Roles for Families (from the Healthy & Ready To Work National Resource Center)

5. Self-assessment tool (from the University of North Carolina’s Smooth Transition to Adulthood Rx)

6. UNC TRxANSITION Scale™ for Adolescents and Young Adults (provider-administered )

7. Transition Information Form (blank form AND a completed sample)

8. Health Record Form (from the Healthy & Ready To Work National Resource Center)

9. Emergency Information for Children with Special Needs (from the American College of Emergency Physicians and American Academy of Pediatrics.)

10. Transition Action Care Plan

Parent/Family version

The 43-page companion handbook written for the parents/family member of youth with disabilities covers many of the same topics, but adds a chapter on advocacy and dropping the appendices. Much of the text is bulleted in the parent/family version and written at a 10th grade level, so easy to read.

Here are the contents of the Parent/Family version:
- Chapter 1: What is Transition?

- Chapter 2: What is a Medical Home?

- Chapter 3: Pediatric vs. Adult Health Care Providers

- Chapter 4: Health Care Transition Planning

- Chapter 5: Health Care Coverage and Legal Issues

- Chapter 6: Cultural Competence and Transition

- Chapter 7: Advocacy, Support and Mentoring

Descriptions above are based on an online review of the guides on 6/4/11
URL for the provider version: www.fpg.unc.edu/~ncodh/pdfs/CHAT_medical_professional_guide_final_2010.pdf

URL for the parent/family version: www.fpg.unc.edu/~ncodh/pdfs/CHAT_Parent_Family_Guide_2010.pdf

Contact Info:
Organization:North Carolina Department of Health and Human Services, Division of Public Health
Address:1931 Mail Service Center
Raleigh, NC 27699-1931
Cost:can be downloaded for free

Web Links

Direct link to PDF of booklet

Homepage of the North Carolina Department of Health and Human Services, Division of Public Health

This information was found at www.qualitymall.org