Pediatric Cardiology

, Volume 39, Issue 2, pp 354–364 | Cite as

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

  • Kathleen L. Grady
  • Kathleen Van’t Hof
  • Adin-Cristian Andrei
  • Tamara Shankel
  • Richard Chinnock
  • Shelley Miyamoto
  • Amrut V. Ambardekar
  • Allen Anderson
  • Linda Addonizio
  • Farhana Latif
  • Debra Lefkowitz
  • Lee Goldberg
  • Seth A. Hollander
  • Michael Pham
  • Jill Weissberg-Benchell
  • Nichole Cool
  • Clyde Yancy
  • Elfriede Pahl
Original Article

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.

Keywords

Heart transplant Adherence Behavior Knowledge Self-management 

Notes

Funding

This study was funded by the National Institutes of Health (NIH), National Heart, Lung, and Blood Institute (NHLBI), Grant Number R34 HL111492. (PIs E Pahl and K Grady)

Compliance with Ethical Standards

Conflict of interest

The authors declare they have no conflict of interest.

Research involving Human Participants

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional research committee [institutional review boards (IRBs)] and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. IRB approval was received from all participating institutions, prior to study initiation.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Supplementary material

246_2017_1763_MOESM1_ESM.docx (38 kb)
Supplementary material 1 (DOCX 37 kb)

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Copyright information

© Springer Science+Business Media, LLC 2017

Authors and Affiliations

  • Kathleen L. Grady
    • 1
  • Kathleen Van’t Hof
    • 2
  • Adin-Cristian Andrei
    • 1
  • Tamara Shankel
    • 3
  • Richard Chinnock
    • 3
  • Shelley Miyamoto
    • 4
  • Amrut V. Ambardekar
    • 5
  • Allen Anderson
    • 1
  • Linda Addonizio
    • 6
  • Farhana Latif
    • 6
  • Debra Lefkowitz
    • 7
  • Lee Goldberg
    • 8
  • Seth A. Hollander
    • 9
  • Michael Pham
    • 9
  • Jill Weissberg-Benchell
    • 2
  • Nichole Cool
    • 10
  • Clyde Yancy
    • 1
  • Elfriede Pahl
    • 2
    • 11
  1. 1.Division of Cardiac Surgery, Northwestern University Feinberg School of MedicineChicagoUSA
  2. 2.Ann & Robert H. Lurie Children’s Hospital of ChicagoChicagoUSA
  3. 3.Loma Linda University Children’s HospitalLoma LindaUSA
  4. 4.Children’s Hospital ColoradoAuroraUSA
  5. 5.University of ColoradoAuroraUSA
  6. 6.Columbia University Medical CenterNew YorkUSA
  7. 7.The Children’s Hospital of PhiladelphiaPhiladelphiaUSA
  8. 8.University of PennsylvaniaPhiladelphiaUSA
  9. 9.Stanford UniversityPalo AltoUSA
  10. 10.Northwestern Memorial HospitalChicagoUSA
  11. 11.Department of MedicineNorthwestern University Feinberg School of MedicineChicagoUSA

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