Beschreibung:
Background: About 3% of new cancer cases affect young adults aged between 15 and39 years. The young age, the increasing incidence and the relatively good prognosis ofthis population lead to the growing importance to investigate the psychosocial long-termand late effects. The aims of the AYA-LE long-term effects study are: first, to assessthe temporal course and related factors of life satisfaction and psychological distress ofadolescent and young adult (AYA) cancer survivors; and second, to examine a specifictopic in each of the yearly surveys in a more differentiated way.Methods: This study represents a continuation of the longitudinal AYA-LE study. Theexisting sample of AYA cancer patients (t1: N = 577; t2: N = 514; aged between 18and 39 years at diagnosis; all major tumor entities) was extended by four further surveypoints (t3: 2018, t4: 2019, t5: 2020, t6: 2021). In addition, a comparison sample of youngadults without cancer was collected. We measured longitudinal data for outcomes suchas quality of life, psychological distress, and fatigue with standardized questionnaires.Furthermore, each survey point included a different cross-sectional topic (e.g., healthbehavior, occupational situation, and compliance).Discussion: The AYA-LE long-termeffects study will show the long-termconsequencesof cancer in young adulthood. We expect at least complete data of 320 participants tobe available after the sixth survey, which will be completed in 2021. This will provide acomprehensive and differentiated understanding of the life situation of young adults withcancer in Germany. The findings of our study enable a continuous improvement of thepsychosocial care and specific survivorship programs for young cancer patients.