Dataset Information

Pediatric Heart Transplantation: Transitioning to Adult Care (TRANSIT): Baseline Findings.

ABSTRACT: Young adult solid organ transplant recipients who transfer from pediatric to adult care experience poor outcomes related to decreased adherence to the medical regimen. Our pilot trial for young adults who had heart transplant (HT) who transfer to adult care tests an intervention focused on increasing HT knowledge, self-management and self-advocacy skills, and enhancing support, as compared to usual care. We report baseline findings between groups regarding (1) patient-level outcomes and (2) components of the intervention. From 3/14 to 9/16, 88 subjects enrolled and randomized to intervention (n = 43) or usual care (n = 45) at six pediatric HT centers. Patient self-report questionnaires and medical records data were collected at baseline, and 3 and 6 months after transfer. For this report, baseline findings (at enrollment and prior to transfer to adult care) were analyzed using Chi-square and t-tests. Level of significance was p < 0.05. Baseline demographics were similar in the intervention and usual care arms: age 21.3 ± 3.2 vs 21.5 ± 3.3 years and female 44% vs 49%, respectively. At baseline, there were no differences between intervention and usual care for use of tacrolimus (70 vs 62%); tacrolimus level (mean ± SD = 6.5 ± 2.3 ng/ml vs 5.6 ± 2.3 ng/ml); average of the within patient standard deviation of the baseline mean tacrolimus levels (1.6 vs 1.3); and adherence to the medical regimen [3.6 ± 0.4 vs 3.5 ± 0.5 (1 = hardly ever to 4 = all of the time)], respectively. At baseline, both groups had a modest amount of HT knowledge, were learning self-management and self-advocacy, and perceived they were adequately supported. Baseline findings indicate that transitioning HT recipients lack essential knowledge about HT and have incomplete self-management and self-advocacy skills.

SUBMITTER: Grady KL

PROVIDER: S-EPMC5799004 | biostudies-literature | 2018 Feb

REPOSITORIES: biostudies-literature

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Pediatric Heart Transplantation: Transitioning to Adult Care (TRANSIT): Baseline Findings.

Grady Kathleen L KL Hof Kathleen Van't KV Andrei Adin-Cristian AC Shankel Tamara T Chinnock Richard R Miyamoto Shelley S Ambardekar Amrut V AV Anderson Allen A Addonizio Linda L Latif Farhana F Lefkowitz Debra D Goldberg Lee L Hollander Seth A SA Pham Michael M Weissberg-Benchell Jill J Cool Nichole N Yancy Clyde C Pahl Elfriede E

Pediatric cardiology 20171103 2

Young adult solid organ transplant recipients who transfer from pediatric to adult care experience poor outcomes related to decreased adherence to the medical regimen. Our pilot trial for young adults who had heart transplant (HT) who transfer to adult care tests an intervention focused on increasing HT knowledge, self-management and self-advocacy skills, and enhancing support, as compared to usual care. We report baseline findings between groups regarding (1) patient-level outcomes and (2) comp ...[more]

PMID: 29098353

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Project description:BACKGROUND:Hospital charges and lengths of stay may be greater when adults with chronic conditions are admitted to children's hospitals. Despite multiple efforts to improve pediatric-adult healthcare transitions, little guidance exists for transitioning inpatient care. OBJECTIVE:This study sought to characterize pediatricadult inpatient care transitions across general pediatric services at US children's hospitals. DESIGN, SETTING AND PARTICIPANTS:National survey of inpatient general pediatric service leaders at US children's hospitals from January 2016 to July 2016. MEASUREMENTS:Questionnaires assessed institutional characteristics, presence of inpatient transition initiatives (having specific process and/or leader), and 22 inpatient transition activities. Scales of highly correlated activities were created using exploratory factor analysis. Logistic regression identified associations between institutional characteristics, transition activities, and presence of an inpatient transition initiative. RESULTS:Ninety-six of 195 children's hospitals responded (49.2% response rate). Transition initiatives were present at 38% of children's hospitals, more often when there were dual-trained internal medicine-pediatrics providers or outpatient transition processes. Specific activities were infrequent and varied widely from 2.1% (systems to track youth in transition) to 40.5% (addressing potential insurance problems). Institutions with initiatives more often consistently performed the majority of activities, including using checklists and creating patient-centered transition care plans. Of remaining activities, half involved transition planning, the essential step between readiness and transfer. CONCLUSIONS:Relatively few inpatient general pediatric services at US children's hospitals have leaders or dedicated processes to shepherd transitions to adultoriented inpatient care. Across institutions, there is a wide variability in performance of activities to facilitate this transition. Feasible process and outcome measures are needed.

Project description:BackgroundThere is a need for medical education on health care transitions for youth with special health care needs. The Texas Transition Toolkit (the tool) supports providers through a one-stop shop for researching literature on care transitions, a catalog of care transition tools, and guides for developing care transition programs.ObjectiveThis study aims to assess the functionality and usability of the tool with providers working with transition-aged children and youth with special health care needs (representative users).MethodsThe tool was evaluated using a triangulated mixed methods case study approach consisting of a concurrent think-aloud phase, a satisfaction survey, and a survey of problem relevance and task performance to operationalize and capture functionality and usability. Our mixed methods deep dive into the functionality and usability of the tool focused on 10 representative users from one medical home in Texas and 5 website design experts.ResultsRepresentative users found the tool to be highly relevant, as demonstrated by the satisfaction score for relevance (138/150, 92%). According to the users, the tool provided comprehensive information related to health care transitions for youth with special health care needs, with a satisfaction score of 87.3% (131/150) for comprehensive. Overall satisfaction with the tool was high at 81.92% (1065/1300) with a cutoff score of 73.33% (953.4/1300) indicating high satisfaction, but users reported relatively lower satisfaction with search (114/150, 76%) and navigation (ease of use: 114/150, 76%; hyperlinks: 163/200, 81.5%; structure: 159/200, 79.5%). They experienced search- and navigation-related problems (total problems detected: 21/31, 68%) and, based on quality checks, had a relatively low task completion rate for tasks involving finding information (60/80, 75%), which required searching and navigation. The problems identified around search and navigation functionality were relevant (relevance scores ranging from 14.5 to 22, with a cutoff score of 11.7 indicating relevance).ConclusionsThe tool may help bridge the gaps in training on health care transitions for youth with special health care needs in US medical education. The tool can be used to create structured protocols to help improve provider knowledge, collaboration across pediatric and adult care providers, and the continuity of care as youth with special health care needs transition from pediatric to adult care. The results provided a road map for optimizing the tool and highlighted the importance of evaluating eHealth technologies with representative users.

Dataset Information

Pediatric Heart Transplantation: Transitioning to Adult Care (TRANSIT): Baseline Findings.

Publications

Pediatric Heart Transplantation: Transitioning to Adult Care (TRANSIT): Baseline Findings.

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