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

Pediatr Cardiol. 2018 Feb;39(2):354-364 doi: 10.1007/s00246-017-1763-x.
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.

CET Conclusion
Reviewer: Dr. Liset Pengel, Centre for Evidence in Transplantation, The Royal College of Surgeons of England.
Conclusion: This report presents baseline data of a pilot RCT that compares a transition programme to adult care with usual care for young adults who had a heart transplant. Eighty-eight patients ≥18 years were recruited from six paediatric heart transplant centres in the US and randomised to a 3-month, 2 phase transition programme or standard transfer of care. Prior to randomisation medical records data were collected and at the last paediatric clinical visit patients completed self-report instruments. The two intervention groups showed no differences in terms of baseline and clinical characteristics or on any of the self-report instruments. The Heart Transplant Knowledge Questionnaire tested knowledge of medications, appointment keeping, healthy lifestyle, benefits and risks of heart transplantation, and transition to adult care, and showed low scores at baseline. Scores on other questionnaires showed that patients are still developing self-management skills and self-advocacy skills. Follow-up data at 3 and 6 months will show whether the transition programme is successful in improving these outcomes and skills when compared to usual care.
Expert Review
Reviewer: Professor Michael Burch, Great Ormond Street Hospital, London, United Kingdom.
Conflicts of Interest: No
Clinical Impact Rating 3
Review: This interesting study investigates young adult heart transplant patients transitioning to adult care. The data shown represents the baseline values and shows that the young adults do not have a good understanding of heart transplantation and their self-advocacy and self-management skills are incomplete. This has implications for all paediatric heart transplant programmes.
Study Details
Aims: To compare an intervention focussed on increasing heart transplant (HT) knowledge, self management, self-advocacy skills and enhancing support, against usual care in young adult HT recipients transferring to adult care.
Interventions: Participants were randomised to receive either a transition program focussing on increasing HT related knowledge, self-care, self-advocacy skills, and social support, versus usual care.
Participants: 88 HT recipients from 6 Children’s Hospitals, ready to transition to the adult program, aged ≥ 18 years.
Outcomes: Measured outcomes included HT knowledge, self-management and self-advocacy, support, immunosuppression, adverse events and adherence.
Follow Up: 3 and 6 months.
Metadata
Publication type: Multicenter Study, Randomized Controlled Trial, Randomised Controlled Trial
Trial registration: ClinicalTrials.gov - NCT02090257
Organ: Heart
Language: English
Author email: kgrady@nm.org
MeSH terms: Adult; Female; Health Knowledge, Attitudes, Practice; Heart Transplantation; Humans; Male; Patient Compliance; Patient Education as Topic; Pilot Projects; Program Evaluation; Prospective Studies; Self Report; Self-Management; Surveys and Questionnaires; Transition to Adult Care; Young Adult