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Because of the high mortality rate of sickle cell disease (SCD) patients who do not continue care into adulthood, researchers have paid increasing attention to the health care transition experiences of SCD patients. However, a gap exists regarding patients' perspectives of care transition related to their quality of life. The purpose of this phenomenological study, guided by the biosocial-ecological systems model, was to explore the lived health care transition experiences of SCD patients in relation to their health-related quality of life. Data collection included open-ended interviews with 12 patients in the Southwestern United States. Colaizzi's (1978) method of phenomenological data analysis was used to identify themes, including resistance to transition; inadequate transitional support; lack of autonomy and education; fear, anxiety, and stress; and managing other life changes. Results contribute to the existing research on SCD health care transition, broaden understanding of the transition process and provide guidance for improving transition programs.

Heart failure (HF) patients are among the populations with the highest rates of hospital readmission within 30 days of discharge. Because of the 2010 Health Care Reform legislation, healthcare organizations are subject to financial penalty when a patient population exhibits excess readmissions. A significant reason for readmission of HF patients is a gap in the transition of care from hospital to home. The purpose of this doctoral project was to develop a practice guideline of best practices for transitioning HF patients from hospital to home. The transitional care model and care transitions intervention provided the theoretical underpinnings for developing this project. The research question explored whether a transition-of-care guideline would reduce hospital readmission for the HF population. The methodology used to develop the clinical practice guideline was derived from a synthesis of scholarly literature and evidence-based transitional care quality initiatives. Seven interdisciplinary experts involved in HF transition of care used the Appraisal of Guidelines Research and Evaluation II instrument (AGREE II) to assess the development of the practice guideline. The scores of 6 AGREE II domains were summed and scaled to obtain a percentage of the maximum possible score for each domain. Scores showed that the clinical practice guideline was rigorous, high quality, effective in improving transition of care, and has the potential to reduce HF readmission. Positive social changes resulting from this practice guideline include an improvement in patient outcomes, a reduction in readmission rates, and a reduction in the associated financial burden to the hospital.

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.

Communication of hospital discharge instructions between patient and provider is an important component of hospital discharge to ensure that patients have the information they need to manage their post-acute care. Patient perception of this interaction is a key indicator of the quality of services provided. This study examined whether there is a correlation between hospital continuity and transition scores (a measure of patient perceptions of hospital discharge instructions) and hospital readmissions in Ontario. The final regression model for the outcome of all medical readmissions within three days of hospital discharge, showed a significant positive relationship (coefficient=0.0090, p=0.011). The estimate was smaller and not significant once the data was restricted to only community hospitals located outside of Toronto (coefficient=0.0085, p=0.060), and when restricted to urban community hospitals outside of Toronto (coefficient=0.0041, p=0.384). For the outcome of specific medical readmissions within 28 days of hospital discharge, no statistically significant relationship was found.