Lifetime Achievement and Quality of Life in Adult Survivors of Pediatric Heart Transplant

Abstract

Purpose As survival in pediatric heart transplant (HTx) improves, an increasing proportion of children receiving HTx are entering adulthood. Many quality of life (QOL) studies have looked at adult HTx patients, but only a few have looked at the population who received a HTx as a child. It is important to examine how this chronic illness affects children's development and eventual transition to adulthood, so that we may improve counseling of future patients. Methods Patients who received a HTx with the pediatric program at Columbia University Medical Center from 1984 through August 1, 2007, who are now > 18 years old and have survived over 10 years since HTx were asked to complete 2 surveys: (1) CHONY Pediatric Heart Transplant Life Achievement Survey, which examines marital and employment status, education level, personal income, health insurance status, and living environment, and (2) Quality of Life Index (QLI) by Ferrans and Powers, which scores life satisfaction from 0 (least satisfied) to 1 (most satisfied) as an overall score, and in 4 distinct domains (health/function, socioeconomic, psych/spiritual, and family). Results The Life Achievement Survey was completed by 54 patients (median age 8 years at transplant and 25 years at time of survey, 44% female, 26% transplanted for congenital heart disease). Fifteen patients have either been married (1 divorced) or part of an unmarried couple, and 7 have children (6 biological including 1 female). Thirty-seven patients are either employed or a student, and 16 earn over $25,000 annually. Almost a third of patients (n=16) live independently, while 5 are homeowners. Fifty patients completed the QLI and reported a mean overall QLI 0.76±0.14. The scores in the health/function, socioeconomic, psych/spiritual, and family domains were 0.77, 0.74, 0.74, and 0.8, respectively. Conclusion Our cohort of adult survivors of pediatric HTx have achieved many standard adult milestones such as receiving an education, maintaining relationships, being employed, and living independently. Additionally, they report a suitable QOL, especially in the health/function and family domains.