• Adolescents and Young Adults with Sickle Cell Disease Transition Readiness to Adult Care

      Speller-Brown, Barbara (2013)
      Purpose: This project applied existing knowledge of the need for transition programs and perceived readiness for transition of healthcare responsibility and transfer among adolescents and young adults (AYAs) with sickle cell disease (SCD) and their parents. The data from this project will be used to guide the development of an intervention program that prepares AYAs and their families for transition from pediatric to adult care. Significance: An increasing number of adolescents and young adults are surviving into adulthood and the need to transition from pediatric to adult care increases. In the United States, it is estimated that greater than 90% of individuals with SCD now reach 21 years of age, and the majority live into their forties. Thus transition has become a major focus. Poor transition services in patients with chronic illnesses have been associated with unnecessary dependency of the patient on their parents or guardians, developmental difficulties, psychosocial delay, lack of continuity of care, disengagement from services and increased morbidity and mortality with subsequent additional health care costs. Self-care management has been identified as essential to transition readiness among adolescents with chronic illnesses. Feeling more self-efficacious in skills for independent hospital visits and a greater perceived independence during consultations was found to be most strongly associated with being ready to transfer. Methods: This study was conducted at a large urban children’s hospital in the Mid-Atlantic region. A convenience sample of 60 AYAs between 14 - 21 years of age and their parents or legal guardians were surveyed. Parallel versions of the Readiness to Transition Questionnaire were administered to AYAs and their parents that assessed health care responsibility behaviors of AYAs and parental involvement and overall readiness to assume complete responsibility for health care and overall readiness to transfer from pediatric to adult care. Results: AYAs perception of overall readiness to assume compete responsibility for their health care had a statistically significant association with the adolescent’s readiness to transfer (beta= .43, p = .000). AYAs did not perceive parental involvement as indicative of transition readiness; however, they did view assuming certain health care responsibilities, such as explaining their medical condition to others and knowing details about insurance as indicative of transition readiness. Parents perceived AYA’s responsibility for health care behaviors and less parental involvement as indicative of transition readiness. Older age was associated with greater perception of overall transition readiness for both parent and AYA (r = .479, p = .000). Disease severity was not significantly associated with overall transition readiness. Conclusion: This project reports a quantitative assessment of AYAs and parents’ perceived readiness to transition from pediatric to adult care as they prepare for the process of transition. So as to shift control of self-care management behaviors from parent to adolescent, both patients and parents identified the need for less parental involvement. These provide information to tailor a transition program that is unique for each individual AYA and their parent.
    • Development and Evaluation of an Adolescent/Young Adult Healthcare Transition Program

      Phillips-Williams, Leslie A. (2016)
      Problem: The 2009-2010 National Survey of Children with Special Health Care Needs revealed that almost twenty percent of adolescents in the United States have a physical, mental, emotional, or learning disability. With continued advances in treatment modalities, technologies and scientific breakthroughs, 90% (750,000) adolescents with special healthcare needs are living well into adulthood. Most adolescents/young adults (AYA) lack needed preparation for transitioning from pediatric to adult providers. A barrier for providers to transitioning AYA is lack of knowledge, confidence and experience to provide transition assessment, planning and transfer in a standardized manner. Purpose: The purpose of this practice project was to develop the interprofessional structure, components, processes and education to support an adolescent, young adult healthcare transition (AYAHT) program, and to evaluate the initial interprofessional education on the AYAHT program. Methods: AYAHT program development and evaluation took place in an outpatient Pediatric Physical Medicine and Rehabilitation (PMR) department in a major metropolitan hospital. Program development and implementation consisted of meetings with Information Technology department specialists and adolescent department transition experts to plan logistics of incorporating the AYAHT program into both the electronic health record and for improving current transition procedures. Using Institute of Medicine (IOM) six aim of quality healthcare (2001) and Issel’s Program Theory (2014) AYAHT was developed into four phases over eight weeks. Phase I: Advance practice nurses (APN’s) (3), engaged in the development of first, second and third drafts of the AYAHT program. Phase II: Pediatric Physiatrists (2) and parent volunteers (2) reviewed the AYAHT program and produced a fourth draft. Phase III: PMR director approved the final version of the AYAHT program, featuring age specific healthcare transition interventions based on the Transition Readiness Assessment Questionnaire (2011) and the Consensus Statement on Healthcare Transitions for Young Adults with Special Healthcare Needs ( American Academy of Pediatrics, American Academy of Family Physicians and American College of Physicians, 2002). Phase IV: PMR APN’s developed education modules from the approved AYAHT version and PMR interprofessional staff (10) were distributed AYAHT Knowledge, Confidence, and Experience (AKCE) 25 item pretest questionnaire and educated. Results: Post AYAHT program education the AKCE 25 item posttest was distributed among the (10) interprofessional members. Using paired T-test, the AKCE demonstrated a significant increase between pre/ post-survey scores for all areas except knowledge of community physiatrist. Rating overall knowledge of AYA transition before education and after educational session revealed a significant difference in pre/post-test means (M=-2.6, SD=.51) and post-test (M=3.9, SD=.73); t(9)=-4.33, p = .002. Conclusion: AYAHT program development, interprofessional engagement and education promotes safe, patient centered, timely, effective, efficient, and equitable outcomes with AYA transition. Fourteen years post publication of the AAP’s Consensus Statement on Healthcare Transitions for Young Adults with Special Healthcare Needs (2002), there remains a gap in consistent, flexible, attentive, responsive, comprehensive coordinated care transition in pediatric institutions. Program replication for implementation promotes future translational research to improve practice outcomes and promote guideline development. DNP as the clinical leader has a role in practice problem evidence translation, dissemination and implementation.