Health-related quality of life after organ transplantation in childhood

Abstract

While sophisticated data on patient and graft survival are available, very little is known about the overall health-related quality of life (HRQOL) after organ transplantation (Tx) in childhood. We examined the perceived HRQOL of survivors of heart, liver and kidney Tx. A previously validated, age-appropriate, multidimensional questionnaire was completed by 59 survivors, currently aged 8-23 years, who had received an organ transplant in 1983-1994, at least 6 months prior to the study. The overall HRQOL score of the patients aged 8-11 was lower than that of the normal controls, while the HRQOL scores of the patients aged 12-15 and 16-23 were similar to those of the controls. However, the younger patients had more complex diseases. Compared to the controls, the patients reported more problems regarding their mobility, usual activities, and school and hobbies. In addition, the patients aged 8-11 reported more problems with eating, elimination, friends and ability to concentrate than the controls. There was an association between age at Tx and HRQOL, but no association between the type of Tx or time since Tx and HRQOL. The perceived emotional status of the patients was better than that of the controls, especially during and after adolescence. We conclude that to provide optimal care, patients HRQOL should be assessed. Although the survivors report problems, the overall HRQOL after Tx is good. The occurrence of complications before Tx appears to be a crucial factor as regards the long-term HRQOL of the survivors. Attention should be paid to treatment prior to Tx and to the timing of Tx in order to improve the HRQOL after Tx.