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 Sawyer Anderson, Linda Addonizio, Farhana Latif, Debra Lefkowitz, Lee Goldberg, Seth A. Hollander, Michael Pham, Jill A Weissberg Benchell, Nichole Cool, Clyde W Yancy, Elfriede Pahl

*Corresponding author for this work

Research output: Contribution to journalArticle

2 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)354-364
Number of pages11
JournalPediatric cardiology
Volume39
Issue number2
DOIs
StatePublished - Feb 1 2018

Fingerprint

Heart Transplantation
Transition to Adult Care
Pediatrics
Transplants
Tacrolimus
Self Care
Young Adult
Knowledge Management
Chi-Square Distribution
Self Report
Medical Records
Arm
Demography
Learning

Keywords

  • Adherence
  • Behavior
  • Heart transplant
  • Knowledge
  • Self-management

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Cardiology and Cardiovascular Medicine

Cite this

Grady, Kathleen L ; Hof, Kathleen Van’t ; Andrei, Adin-Cristian ; Shankel, Tamara ; Chinnock, Richard ; Miyamoto, Shelley ; Ambardekar, Amrut V. ; Anderson, Allen Sawyer ; Addonizio, Linda ; Latif, Farhana ; Lefkowitz, Debra ; Goldberg, Lee ; Hollander, Seth A. ; Pham, Michael ; Weissberg Benchell, Jill A ; Cool, Nichole ; Yancy, Clyde W ; Pahl, Elfriede. / Pediatric Heart Transplantation : Transitioning to Adult Care (TRANSIT): Baseline Findings. In: Pediatric cardiology. 2018 ; Vol. 39, No. 2. pp. 354-364.
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Grady, KL, Hof, KV, Andrei, A-C, Shankel, T, Chinnock, R, Miyamoto, S, Ambardekar, AV, Anderson, AS, Addonizio, L, Latif, F, Lefkowitz, D, Goldberg, L, Hollander, SA, Pham, M, Weissberg Benchell, JA, Cool, N, Yancy, CW & Pahl, E 2018, 'Pediatric Heart Transplantation: Transitioning to Adult Care (TRANSIT): Baseline Findings', Pediatric cardiology, vol. 39, no. 2, pp. 354-364. https://doi.org/10.1007/s00246-017-1763-x

Pediatric Heart Transplantation : Transitioning to Adult Care (TRANSIT): Baseline Findings. / Grady, Kathleen L; Hof, Kathleen Van’t; Andrei, Adin-Cristian; Shankel, Tamara; Chinnock, Richard; Miyamoto, Shelley; Ambardekar, Amrut V.; Anderson, Allen Sawyer; Addonizio, Linda; Latif, Farhana; Lefkowitz, Debra; Goldberg, Lee; Hollander, Seth A.; Pham, Michael; Weissberg Benchell, Jill A; Cool, Nichole; Yancy, Clyde W; Pahl, Elfriede.

In: Pediatric cardiology, Vol. 39, No. 2, 01.02.2018, p. 354-364.

Research output: Contribution to journalArticle

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T2 - Transitioning to Adult Care (TRANSIT): Baseline Findings

AU - Grady, Kathleen L

AU - Hof, Kathleen Van’t

AU - Andrei, Adin-Cristian

AU - Shankel, Tamara

AU - Chinnock, Richard

AU - Miyamoto, Shelley

AU - Ambardekar, Amrut V.

AU - Anderson, Allen Sawyer

AU - Addonizio, Linda

AU - Latif, Farhana

AU - Lefkowitz, Debra

AU - Goldberg, Lee

AU - Hollander, Seth A.

AU - Pham, Michael

AU - Weissberg Benchell, Jill A

AU - Cool, Nichole

AU - Yancy, Clyde W

AU - Pahl, Elfriede

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N2 - 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.

AB - 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.

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