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