RESUMO
BACKGROUND AND OBJECTIVE: The long-term psychosocial outcome of young adults after paediatric liver transplantation (LT) was investigated with the focus on day-to-day living. We aimed to capture patients' subjective perceptions of well-being and autonomy based on key physical outcome parameters. METHODS: All patients following paediatric LT at Hannover Medical School born before 2002 with a post-transplant follow-up of at least four years were included in this study. This retrospective observational study compared psychosocial parameters obtained from a self-designed 77-item questionnaire with standard clinical outcome variables. RESULTS: Eighty-two patients (male: 57%) aged 13-41 years were included in the survey within a three-month period (response rate: 41%). With an adherence rate of 33%, all but two patients were immunosuppressed. In total, 53 patients had transitioned to adult care largely without problems. Eighty-three percent (n = 68) evaluated their current health status as "(very) good". Sixty-seven patients (82%) did not experience health-related anxiety in daily life. CONCLUSIONS: Our results demonstrate psychological stability and high self-esteem of young patients, as well as good integration into society and a high degree of normality during daily life after LT. Adherence rates are lower than anticipated and do not correlate with patients' understanding of their medical condition.