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

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

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, 2009-2010)

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)

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

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).

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

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

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

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)?

Literature Review

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)

Descriptive Data

Findings: Age for YSHCN

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

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).

Age to Begin Transition Planning

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 %

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 %

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

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

Implications for Health Policy CSHCN receiving comprehensive and coordinated care within a New Mexico medical home has decreased from 42% in a 2005-2006 survey to 35% in 2009-2010 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, 2009-2010)

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

Questions Contact Information: Doris Tinagero, Executive Director of UNM CTH and Pediatric Ambulatory, Email: dtinagero@salud.unm.edu