Quality of life and lifetime achievement in adult survivors of pediatric heart transplant.


Quality of life and lifetime achievement in adult survivors of pediatric heart transplant.

Stanford NT, McAllister J, Gibbons M, Jensen K, Lee H, Rothkopf A, Jackson R, Farr M, Addonizio L, Law S, Lee T, Richmond M, Zuckerman W. Pediatr Transplant. 2022 Nov;26(7):e14370. doi: 10.1111/petr.14370. Epub 2022 Aug 11.PMID: 35950955

Take Home Points:

  • A significant percentage of adult survivors of pediatric OHT are able to achieve the usual societal milestones of full employment, marriage and independence.
  • About 1/3 of adult survivors of pediatric OHT receive a college degree or higher.
  • They report satisfactory QoL, comparable to that of other groups with chronic diseases.
  • The era of transplantation and the type of physician group (adult or pediatric) that follows them does nto have an impact on the overall QoL of adult survivors of HT.

Commentary from Dr. Anna Tsirka (Hartford, CT, USA), section editor of Pediatric and Fetal Cardiology Journal Watch


Survival from Pediatric heart transplantation (PHT) has improved over the years, with the median survival estimated at 18-25 years post-transplant for current recipients. Studies on adult recipients of a heart transplant (OHT) show improved quality of life (QoL) compared to prior to transplant. Pediatric recipients however face additional challenges including interruption in normal growth and development,
missing school, effects of heart disease and cardiac bypass on the developing brain, and lifelong immunosuppression.  To date, no QoL studies have been performed on adults who received OHT as a child.


Adult patients followed at Columbia Hospital were included if they received a OHT at an age <18 y/o between 1984 and 2007 and have survived at least 10 years post OHT. Patients were asked to complete two surveys: CHONY Pediatric Heart Transplant Life Achievement Survey, which is a simple survey asking about family structure, education, employment and income, and the Quality of Life Index (QLI) cardiac version by Ferrans and Power, which evaluates health and functioning. The results were evaluated by domain, and were subdivided by age at transplantation, current age, indication for transplant and if they are followed by pediatric or adult cardiology.


113 patients were included but only 66 (58%) completed the surveys. Average age at survey was 26.5 years. 62% of respondents were caucasian. 75% of responders were transplanted for cardiomyopathy and only 22% for CHD. 71% were never married and 13.6% had children. 9% did not have a high school degree, while 33% had completed college or a postgraduate degree. 9% were unable to work and 16.7% were unemployed. 34% lived independently and 42% were insured through Medicare/ Medicaid.

The overall mean QLI score was 0.75 ± 0.14 (where 0=very dissatisfied and1=very satisfied). The scores in the health/function, socioeconomic, psych/spiritual, and family domains were 0.75 ± 0.16, 0.72 ± 0.15, 0.73 ± 0.18, and 0.81 ± 0.12, respectively. Highest score was in family domain and lowest in socioeconomic domain.

Among the subgroups, neonatal transpalntation,  female gender and transplantation for CHD had a weak correlation with better QoL as shown in figure 2, although none of the differences reached statistical significance. QoL was not associated with transplantation era or with type of physician group (adult versus pediatric).


This study demonstrates that adult survivors of pediatric OHT can achieve satisfactory QoL, especially in the family domain. They can achieve the usual societal milestones, although a significant proportion is unable to work. A similar percentage as the US census achieve a college or higher degree,  although this finding may be biased by the retrospective nature of the study and the population selection.In addition, this population seemed to be less likely to be married and have children that the generla populaiton.

The study is limited by its small sample, and by the fact that QoL questionnaires were not obtained in comparable control samples.