1. Challenges of Transitioning Youth with Special Health Care Needs
Doris Tinagero, DNP, RN, NEA-BC
June 11, 2018

2. Objectives
Describe the proper use of the term "Special Health Care Needs" in pediatrics
Identify critical steps for transition and transfer for youth
Discuss some the barriers to transition and transfer for youth with special health care needs in New Mexico

3. Background Defining special health care needs (SHCN)
98,000 or 19% of all children residing in New Mexico have SHCN
Almost half of these children nearing the transition age
Transition policy is a critical initial step
(CAHMI, 2016)
(NS-CSHCN, )

4. Background
Transition: “The process of moving to adult care, preparation for which starts within child health services and continues in adult services”
Transfer: “The point at which the young person moves to adult health services and is discharged from child health services”
(Aldiss, Cass, Ellis, & Gibson , 2016, p. 6)

5. Goals of Transition Maximize lifetime functioning
Developmentally appropriate
Medically appropriate
Uninterrupted
(AAP, AAFP, & ACP-ASIM, 2002)

6. Qualities of Transition
Comprehensive
Well-planned
Coordinated
Gradual
Inadequacy of transition planning for youth with special health care needs (YSHCN) can lead to poor medical outcomes
(AAP, AAFP, & ACP-ASIM, 2002)
(Prior, McManus, White, & Davidson, 2014).

7. Transition & New Mexico
CSHCN: Received services necessary for transition
Non-CSHCN: Received services necessary for transition

8. Transition Policies
Require providers to establish consensus on transition and transfer age
Decreases practice variability
Reduces patient and family confusion
Mitigates gaps in medical care

9. Examining Transition Age
Provide Guidance
Examine Barriers
Establish a greater understanding of the existing barriers to transition and transfer in terms of age perceptions of providers within an academic health system
Provide guidance for the creation of a systematic approach to transition for youth with and without SHCN

10. Clinical Research Question
For Youth with Special Health Care Needs at an Academic University, does the perceived age of transition and transfer into an adult medical setting differ between providers’ practice types (generalist/primary versus specialty), clinical settings (inpatient versus outpatient), and practice populations (pediatric versus adult)?

11. Literature Review

12. Study Specifics
Academic health system in the southwest with a level I trauma center and children’s hospital
Timeline: September 14 through October 26, 2017
School of medicine and hospital
Physicians (MD and DO)
Advanced practice registered nurses (APRN)
Clinical nurse specialists (CNS)
Physician assistants (PA)

13. Descriptive Data

14. Findings: Age for YSHCN

15. Pediatric Specific Results
p = .003, Cohen’s d = 1.05

16. Comparing Youth with and without SHCN Youth without SHCN
Transition and transfer median age for all provider types
Strong positive correlation between the two variables, r = .52,
p = < .001 and a medium effect size (Cohen’s dz = .68).

17. Age to Begin Transition Planning

18. Transition Support Practices for YSHCN
Respondent Percentages for Transition Support Practices
Do not provide this service
Provide adolescents/parents with an educational packet or handouts
69 %
Discuss consent and confidentiality issues prior to age 18
54 %
Discuss assent to care issues prior to age 18
53 %
Assist in creating a portable medical summary
72 %
Create an individualized health care transition plan
75 %

19. Transition Support Practices for YSHCN
Respondent Percentages for Transition Support Practices
Do not provide this service
Assist with establishing referral to specific family or internal medicine physicians
50 %
Assist with establishing referral to specific adult specialists
42 %
Support family or internal medicine physicians with education and consultation
54 %
Assist with medical documentation for program eligibility such as SSI, vocational rehabilitation, college
53 %
Assist with identifying options to maintain health care insurance after age 18
59 %

20. Barriers to Transitioning for YSHCN
Major Barriers
Lack of available family physicians or internal medicine physicians to care for older adolescents/young adults with special needs
Lack of available adult specialists to care for older adolescents/young adults with special needs
Fragmentation of primary and specialty care in adult care

21. Implications for Nursing Practice
Lack of an age consensus among providers creates challenges for patients and families as they navigate the health care system
Practice-wide health care transition policy should be the initial focus of a process improvement effort for the organization
EHR driven transition tool could improve communication between providers and decrease duplication of transition and transfer planning efforts for the health system
Need to break down the age-based criteria for services within the hospital units

22. Implications for Health Policy
CSHCN receiving comprehensive and coordinated care within a New Mexico medical home has decreased from 42% in a survey to 35% in
New Mexico Block (Title V) grant application emphasizes coordinating care by highlighting strategies of increasing access for CSHCN to medical homes practices
Unfortunately, current patient-centered medical home standards by the NCQA do not require the inclusion of transition for YSHCN
Health care systems must include a transition focused provider network, targeted care coordination, and interagency collaboration
(NS-CSHCN, )

23. Conclusion Transitioning YSHCN requires flexibility and judgement
Gradual approach to transition is essential
Medical Homes need to prioritize transition for all youth
Health system redesign will require collaboration and a commitment to patient-centered care

24. Questions
Contact Information: Doris Tinagero, Executive Director of UNM CTH and Pediatric Ambulatory,