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. 2025 Apr 1:8:100250.
doi: 10.1016/j.jhlto.2025.100250. eCollection 2025 May.

Identifying the determinants of health-related quality of life in children after heart transplant

Jonathan B Edelson  1   2   3   4 , Jing Huang  5 , Zi Wang  5 , Vicky Tam  5 , Debra Lefktowitz  1 , Matthew J O'Connor  1 , Rachel White  1 , Lynne Ha  1 , Carol A Wittlieb-Weber  1 , Joseph W Rossano  1   2   3 , Kimberly Lin  1 , Melissa K Cousino  6 , Meghan Lane-Fall  2   4   7 , Michael L O'Byrne  1   2   3   4
Affiliations

Identifying the determinants of health-related quality of life in children after heart transplant

Jonathan B Edelson et al. JHLT Open. .

Abstract

Background: Pediatric heart transplant (PHT) recipients have impaired health-related quality of life (HRQOL) that is not fully explained by cardiac limitations. Environment is known to influence HRQOL in other chronic disease populations but is less understood in PHT. Understanding the determinants of HRQOL is a necessary step in identifying high-risk groups and designing actionable interventions.

Methods: This cross-sectional study includes 8- to 18-year heart transplant (HT) recipients and their families. Generalized estimating equations were used to evaluate the associations of individual characteristics (diagnosis, pulmonary capillary wedge pressure [PCWP], cardiac index [CI]), microenvironment (parent education level, financial security, parental stress [PSI], assessment of child anxiety) and macroenvironment [Child Opportunity Index (COI)] with HRQOL.

Results: Of 31 participants, 32% self-identified as Black, and 40% had congenital heart disease. On cardiac catheterization, 61% had a CI ≥3 liter/min/m2 and PCWP ≤10 mm Hg. Most households had ≥1 parent who had completed college (58%); 28% of households expressed difficulty paying bills. The PSI showed elevated parental stress [64.5 (interquartile range [IQR] 52.0, 77.8)], while the COI was low [73.0 (IQR 44.5, 89.0)] as was HRQOL [Pediatric Quality of Life 4.0 Core Scales 71.7 (IQR 64.2-82.5), Pediatric Cardiac Quality of Life Index 61.8 (IQR 55.7-74.8)]. Higher parental stress (p = 0.036), higher parental perception of child anxiety (p = 0.058), lower Max VO2 (p = 0.059), and higher PCWP (p = 0.006) were independently associated with worse quality of life.

Conclusions: HRQOL in children after heart transplant is reduced and determined not only by traditional measures of cardiovascular function, but also by patient psychology and their household environment, highlighting the utility of using an adapted ecological systems framework to understand HRQOL.

Keywords: congential heart disease; ecological systems; environment; pediatric heart transplant; quality of life.

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Conflict of interest statement

J.E. receives consulting fees from Abbott Technologies and Abiomed. J.R. receives consulting fees from AskBIo, BioMarin, Bayer, Merck, and Bristol Myers Squibb. The remaining authors have no relevant disclosures. Support for this study was provided in part by 10.13039/100000002NIH K23-HL130420-01.

Figures

Figure 1
Figure 1
Conceptual model. HRQOL, health–related quality of life.
Figure 2
Figure 2
Cohort development.
Figure 3
Figure 3
Patient quality of life scores.
Figure 4
Figure 4
COI levels. COI, Child Opportunity Index.
Figure 5
Figure 5
Higher parental stress and perceptions of child anxiety are associated with lower QOL. QOL, quality of life.
Figure 6
Figure 6
Higher exercise capacity is associated with higher QOL. QOL, quality of life.
See this image and copyright information in PMC

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