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.

Exploring the developmental tasks of emerging adults after paediatric heart transplantation: a cross-sectional case control study

“…However, the duration of the longest relationship did not differ between groups. The results differ somewhat from those of the study by Grady and colleagues, 36 in which only 9% of the patients reported having a partner, compared with the 32% in our study. This finding might be due to difficulties in initiating partnership, while partnership stability might not be compromised in PHTX patients once they have found a partner.…”

“…These findings are similar to those of a recent study by Grady and colleagues, who examined 88 young adults after PHTX in their early 20s. 36 About 50% of the patients reported working for income, compared with 51% in our study (part time work, full time work and apprenticeship taken together). As in our study, PHTX patients more frequently had to repeat at least one school year, probably due to health problems and hospital stays, the choice of full-time work, which might reflect the choice for non-academic career paths, might be related to more academic difficulties related to their disease.…”

Transition readiness measures for adolescents and young adults with chronic health conditions: a systematic review

“…Individual studies have shown the value of beginning transition planning around the age of 12-14 years, allowing AYA time to master skills necessary to manage their own healthcare responsibly [25,38,47,63]. To meet the needs of AYA and promote successful transitions, measures of transition readiness need to be done over time [12,29,65]. This research reinforces the need to engage AYA at an early age and throughout the transition process.…”

“…The TRAQ 4.1, a disease-neutral measure, was used in six studies with AYA with a single disease population: congenital heart disease/pediatric heart transplantation [3,12,13,15,16], cystic fibrosis [17], and childhood cancer survival [18]; and in three studies with a diverse sample of conditions ranging from four specified conditions [14] to 11 specified conditions [2]. The TRAQ 5.0 was used in five studies with AYA with a single condition, including chronic rheumatology conditions [19], diabetes [22,24], inflammatory bowel disease [23], and spina bifida [25].…”

What Do We Know About Young Adult Cardiac Patients' Experience? A Systematic Review

“…Studies that include young adults coping with a cardiac illness are scarce (McDonough, 2009 ; Wong et al, 2017 ). Systematic reviews interested in the psychosocial aspects of individuals coping with a cardiac illness do not specifically deal with young adults (Fredericks et al, 2012 ; Foxwell et al, 2013 ; Herr et al, 2014 ; Doyle et al, 2015 ; Li et al, 2015 ; Tully et al, 2015 ; Ooi et al, 2016 ; Le et al, 2018 ), and studies that do usually focus on patients coping with congenital heart diseases (Van Rijen et al, 2004 , 2005a , b ; Fredriksen et al, 2009 ; Asp et al, 2015 ; Uzark et al, 2015 , 2016 ; Jackson et al, 2017 ; Abda et al, 2018 ; Andonian et al, 2018 ; Grady et al, 2018 ; Monti et al, 2018 ).…”