Background: Nearly 750,000 adolescents and emerging adults with special health care needs (AEA-SHCN) enter into adulthood annually. The linkages to ensure the seamless transfer of care from pediatric to adult care and transition to adulthood for AEA-SHCN have yet to be realized. Purpose: The purpose of this systematic review was to investigate the state of the science of health care transition (HCT) service models as described in quantitative investigations. Methods: A four-tier screening approach was used to obtain reviewed articles published from 2004 to 2013. A total of 17 articles were included in this review. Discussion: Transfer of care was the most prominent intervention feature. Overall, using the Effective Public Health Practice Project criteria, the studies were rated as weak. Limitations included lack of control groups, rigorous designs and methodology, and incomplete intervention descriptions. Conclusion: As the findings indicate, HCT is an emerging field of practice that is largely in the exploratory stage of model development.

Background: Health care transition (HCT) for adolescents and emerging adults (AEA) with special health care needs is an emerging field of interdisciplinary field of practice and research that is based upon an intergenerational approach involving care coordination between pediatric and adult systems of health care. Informed understanding of the state of the HCT science pertaining to this group of providers is needed in order to develop and implement service programs that will meet the comprehensive needs of AEA with special health care needs. Methods: The authors conducted a systematic review of the literature on the transition from child to adult care for adolescents and emerging adults (AEA) with special health care needs from 2004 to 2013. Fifty-five articles were selected for this review. An adaptation of the PRISMA guidelines was applied because all studies in this review used descriptive designs. Results: Findings revealed lack of evidence due to the limitations of the research designs and methodology of the studies included in this systematic review. Study findings were categorized the following four types: adult provider competency, provider perspectives, provider attitudes, and HCT service models. The discipline of medicine was predominant; interdisciplinary frameworks based upon integrated care were not reported. Few studies included samples of adult providers. Conclusions: Empirical-based data are lacking pertaining to the role of providers involved in this specialty area of practice. Evidence is hampered by the limitations of the lack of rigorous research designs and methodology.

PURPOSE: The purpose of this study is to report preliminary evidence to support a new condition-specific measure of transition readiness that is theoretically grounded in the Stages of Changes framework. The Transition Readiness Assessment Questionnaire-Spina Bifida (TRAQ-SB) supplement is a newly developed tool used to measure independence and skill acquisition related to spina bifida. Similar to the Transition Readiness Assessment Questionnaire (TRAQ), the TRAQ-SB uses a 5-point Likert response set. METHODS: Working with a multi-disciplinary team with expertise in the care of children with spina bifida, the authors developed twelve items pertaining to main aspects of SB self-management. The items were reviewed and revised through several iterations by the team and patients. The items were then fielded at a spina bifida Specialty Clinic, where 93 consecutive patients 12–25 years of age were approached to participate and 90 were administered the 20-item TRAQ and a 12-item TRAQ-SB questionnaire. A principal component analysis (PCA) was conducted on the twelve items with oblique rotation (promax). Criterion validity was also assessed by examining the correlation of the TRAQ-SB supplement with the TRAQ and with age. RESULTS: Results of the factor analysis revealed that eleven of the twelve items loaded onto one factor with factor loadings ranging from 0.46 to 0.84. The scale yielded excellent internal reliability with a Cronbach alpha of 0.90. Correlations of the TRAQ-SB supplement scale score with the TRAQ overall scale score demonstrated good criterion validity (r= 0.74, p< 0.01). In addition, it was highly correlated with the TRAQ subscales, varying from 0.68 to 0.74 (all p< 0.01). Lastly, the TRAQ-SB was significantly correlated with age (r= 0.25, p< 0.01). CONCLUSIONS: Results of our analyses indicated that the TRAQ-SB demonstrated good internal reliability and criterion validity as evidenced by strong correlation with age and the validated TRAQ measure. The TRAQ-SB tool can be useful to incorporate transition readiness assessment and self-management training into routine care for adolescents with spina bifida.

PURPOSE: In order to transition to adulthood and independence, youth with spina bifida must assume significant self-management responsibilities including monitoring for shunt malfunction, maintaining intact skin in areas that are insensate, and maintaining proper bowel and bladder function. Validated measures of specific spina bifida self-management skills are lacking and this hampers the ability of clinical personnel to support successful transition for youth with spina bifida. METHODS: We developed a self-report measure specific to SB self-management skills consistent with the framework of the Transition Readiness Assessment Questionnaire (TRAQ). To test the predictive validity of the tool we surveyed 90 youth and young adults ages 12-25 with spina bifida attending a multidisciplinary clinic participating in the National Spina Bifida Patient Registry (NSBPR). RESULTS: Adjusted for age, gender, race, insurance status and lesion level, higher scores on the TRAQ-SB (increased self-management) were negatively associated with urinary incontinence in the past month. Only lesion level, and not TRAQ-SB scores, was a significant predictor of stool incontinence and skin breakdown. CONCLUSIONS: Higher TRAQ-SB scores are negatively associated with bladder incontinence in youth with spina bifida. While stool continence and skin breakdown were not associated with TRAQ-SB scores, this relation is complex and may be obfuscated by either reporting bias or outcome measurement bias. To further refine the questionnaire and understand this relationship we need to field it prospectively in the SB network with larger samples. The TRAQ-SB questionnaire, however, does have value in the clinical setting to help promote the acquisition of specific self-management skills among youth with spina bifida.

PURPOSE: Effective interventions are needed to help adolescents with T1D develop independent self-management skills to prevent commonly observed deterioration of disease self-management resulting in poor health outcomes. Using a prospective RCT design, we assessed the impact of a nurse-led education program based on motivational interviewing (MI) in youth with Type 1 diabetes (T1D). DESIGN AND METHODS: After parental consent and youth assent, we prospectively randomized 66 adolescents 13-18 years old with T1D to either usual care (every 3 months visit with pediatric endocrinologist) or usual care supplemented by 2 in-person and 4 follow-up phone calls with a nurse educator in a pediatric endocrinology clinic of the University Hospital Farhat Hached, Sousse, Tunisia. We used MI sessions to support youth general and disease specific self-management skills. Outcomes were change, between baseline and 6 months, in TRAQ (a validated measure of youth self-management) scores and HbA1c values. RESULTS: Mean TRAQ scores (based on a 5-point Likert scale) increased by 1.44 points (s.d. = 0.56) in the Intervention Group versus 0.26 points (s.d. = 0.34) in the control group (p < 0.001). The mean HbA1C value decreased in the intervention group by 0.95 units versus a decrease of 0.12 units in the control group (p = 0.047). CONCLUSION: We found that a brief, nurse-led MI-based educational intervention, integrated into specialty pediatric care, resulted in a significant improvement in both self-reported self-management skills and in HbA1c values. TRIAL REGISTRATION: Registered in ClinicalTrials.gov Identifier: NCT04798937.

Objective: Transfer from pediatric care into the adult health care system is known to be a vulnerable phase in the lives of youth with special health care needs (YSHCN). Recommendations from the literature favor assessment of transition readiness rather than simply pass over YSHCN from pediatric to adult-centered care by the age of 18. Nevertheless, no validated and disease neutral assessment instrument in German exists to date. Hence, our aim was to cross-culturally adapt and to pilot-test a German version of the Transition Readiness Assessment Questionnaire (TRAQ 5.0). We wanted to provide a tool that can be applied broadly during the health care transition (HCT) process of YSHCN. Methods: The development included translating and adapting TRAQ 5.0 to German and conducting a pilot-study with 172 YSHCN between the ages of 14 and 23. Results: Cross-cultural adaptation resulted in the TRAQ-GV-15. Exploratory factor analysis led to a 3 factor-structure. Internal consistency for the overall score was good with a Cronbach’s alpha of 0.82. Age, in contrast to sex, had a significant effect on the TRAQ scoring. The administration of the TRAQ-GV-15 was well received and demonstrated good feasibility. Conclusion: The TRAQ-GV-15 is an easily applicable and clinically usable instrument for assessing transition readiness in German speaking YSHCN prior to HCT.

Objective: Project ECHO (Extension for Community Healthcare Outcomes), a telementoring program, utilizes lectures, case-based learning, and an “all teach–all learn” approach to increase primary care provider (PCP) knowledge/confidence in managing chronic health conditions. The American Academy of Pediatrics (AAP) Epilepsy and Comorbidities ECHO incorporated quality improvement (QI) methodology to create meaningful practice change, while increasing PCP knowledge/self-efficacy in epilepsy management using the ECHO model. Methods: Monthly ECHO sessions (May 2018 to December 2018) included lectures, case presentations/discussion, and QI review. Pediatric practices were recruited through the AAP. Practices engaged in ECHO sessions and improvement activities including monthly Plan-Do-Study-Act cycles, team huddles, chart reviews, and QI coaching calls to facilitate practice change. They were provided resource toolkits with documentation templates, safety handouts, and medication side effects sheets. QI measures were selected from the American Academy of Neurology Measurement Set for Epilepsy. The AAP Quality Improvement Data Aggregator was used for data entry, run chart development, and tracking outcomes. Participants completed retrospective surveys to assess changes in knowledge and self-efficacy. Results: Seven practices participated across five states. Average session attendance was 14 health professionals (range = 13-17). A total of 479 chart reviews demonstrated improvement in six of seven measures: health care transition (45.3%, P =.005), safety education (41.6%, P =.036), mental/behavioral health screening (32.2% P =.027), tertiary center referral (26.7%, not significant [n.s.]), antiseizure therapy side effects (23%, n.s.), and documenting seizure frequency (7.1%, n.s.); counseling for women of childbearing age decreased by 7.8%. Significance: This project demonstrated that integrating QI into an ECHO model results in practice change and increases PCP knowledge/confidence/self-efficacy in managing epilepsy.