Health-related quality of life after pediatric heart transplantation in early childhood

Background There is limited information about HRQL after pediatric heart transplantation at a young age. Methods Prospective follow-up study of children who received a heart transplant at age <= 4 years. HRQL was assessed using the PedsQL(TM) 4.0 at age 4.5 years. This cohort was compared with healthy children, children with CHD, and with chronic conditions. Peri-operative factors associated with HRQL were also explored. Results Of 66 eligible patients, 15 (23%) died prior to the HRQL assessment and 2 (3%) were lost to follow-up, leaving 49 patients. Indication for transplantation was CHD in 27 (55%) and CMP in 22 (45%). Median age (IQR) at transplant was 9 (5-31) months. HRQL was significantly lower in transplanted children compared to population norms (65.3 vs 87.3,P < .0001), children with chronic conditions (65.3 vs 76.1,P = .001), and children with CHD (65.3 vs 81.1,P < .0001). Transplanted children with CHD had lower HRQL than those with a prior diagnosis of CMP (59.5 vs 72.5,P-value = .020). Higher creatinine pretransplant and higher lactate post-operatively were associated with lower HRQL. Conclusion Children after heart transplant had significantly lower HRQL, as reported by their parents, than the normative population, children with chronic conditions, and children with CHD.