BACKGROUND: This study assessed quality of life (QOL) in adult survivors of pediatric heart transplantation who survived > or = 10 years after transplantation. METHODS: Prospective data were collected from heart transplant recipients who were aged > or = 18 years and had survived > or = 10 years after transplantation (transplantation between July 3, 1986, and April 4, 1997). QOL data were collected from patients using the Medical Outcomes Study 36-Item Short Form (SF-36) Health Survey. Clinical data were collected from medical records. Statistical analyses included frequencies and measures of central tendency. RESULTS: Twenty-three patients (65% men, 91% white) completed the study. At the study initiation, they were a mean age of 9.0 +/- 7.1 years at transplantation, and were a mean age of 25.2 +/- 5.5 years (range, 18-34 years) and a mean of 16.2 +/- 3.0 years (range, 11-22 years) post-transplantation. Most were in school or working. Mean patient QOL scores from the SF-36v2 survey were 50.56 +/- 0.5 (range, 27.3-68.9) for physical health and 49.88 +/- 11.72 (range, 23.56-62.84) for mental health, similar to the general United States population. Late complications were frequent, including transplant coronary artery disease, 3; repeat heart transplantation, 2; post-transplantation lymphoproliferative disorder, 6; kidney transplantation, 5; acute late rejection, 5; and arrhythmias, 4. CONCLUSION: This report of QOL in adult survivors of pediatric heart transplantation shows patient perception of physical and mental health is similar to the general population despite serious late complications. A multicenter study is planned to further evaluate QOL in this unique cohort.