Due to the high survival rates of many young cancer patients and a high risk of second tumors, fear of cancer recurrence (FCR) can cause serious impairment for adolescent and young adult (AYA) cancer patients. The aim of this study is to analyze the structure of the Fear of Disease Progression Questionnaire (FoP-Q-12) to better understand the construct of FCR.We performed a cross-sectional survey on a sample of AYA patients aged 15–39 years with different tumor entities. FCR was measured using the FoP-Q-12, and a network analysis was conducted to examine the relationship of FCR symptoms. The importance of individual items in the network was determined using centrality analyses. A total of 247 AYA patients (81.8% female, median age 31.0 years) participated in the study. The mean FCR score in the sample was 35.9 (SD = 9.9). The majority of patients reported having high FCR (59.5%), according to the established cut-off. The two questionnaire items with the strongest association related to fears about work, and the most central symptom was the fear of serious medical interventions. The centrality of emotional issues in the sample indicates that these symptoms should be prioritized in the development of interventions targeting FCR. Further research should address this topic with larger samples of patients in other age groups and in longitudinal studies.

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.

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Background: Sexuality is an important aspect of quality of life for adolescent and young adults that remains understudied in cancer patients. Most current knowledge about how cancer and cancer treatments can affect patients’ sexuality pertains to reproductive cancer patients (breast, gynecological, male reproductive organs), whereas only little is known about how the disease affects the sex lives of patients with other types of cancer. This study examined sexual satisfaction and sexual supportive care needs among adolescent and young adult cancer patients, with a particular focus on how the type of cancer a person has is associated with these issues differently. Methods: Five hundred seventy-seven (n = 424 females, 73.5%) patients between 18 and 39 years of age at diagnosis and representing all major tumor entities completed the standardized questionnaire. The analysis addressed the following topics: sexual satisfaction (Life Satisfaction Questionnaire), sexual supportive care needs (Supportive Care Needs Survey), and changes in sexuality (Questions on Life Satisfaction Modules). These topics were tested by mean differences between reproductive and non-reproductive cancer, equivalence testing and regression analyses. Results: About one third of the patients reported being dissatisfied with their sexuality and having supportive care needs in this area. Changes in sexuality were significantly more common in women with reproductive cancers than in those who had other types of cancer (t = − 2.693, p = .007), while both groups had equivalence in scores for sexual satisfaction and sexual supportive care needs. Reproductive cancers are not more associated with deterioration of sexual satisfaction (R2 = .002, p = .243), changes in sexuality (R2 = .006, p = .070) or increased sexual supportive care needs than non-reproductive cancers (R2 = .004, p = .131). Conclusions: The results indicate that about a third of adolescents and young adults with both reproductive but also with non-reproductive cancer experience sexual dissatisfaction in similar measure. An equal percentage of these patients also express a desire to receive supportive care in this area. Consequently, health care professionals should address issues of sexuality and cancer as a matter of routine when caring for young adults even when patients have a non-reproductive cancer.:Inhaltsverzeichnis 1. Inhaltsverzeichnis 2 2. Abkürzungsverzeichnis 3 3. Einleitung 4 3.1 Sexualität im jungen Erwachsenenalter 4 3.2 Tumorerkrankungen im jungen Erwachsenenalter 5 3.3 Auswirkungen von Tumorerkrankungen auf die Sexualität 7 3.4 Erfassung von Aspekten der Sexualität 9 3.5 Forschungsstand zur Thematik Sexualität nach einer Tumorerkrankung im jungen Erwachsenenalter 12 3.6 Forschungsfragen 13 4. Publikation 15 5. Zusammenfassung 28 5.1 Einführung 28 5.2 Methodik 29 5.3 Ergebnisse 30 5.4 Diskussion 31 6. Literaturverzeichnis 33 7. Anlagen 7.1 Spezifizierung des eigenen Beitrags 39 7.2 Erklärung über die eigenständige Abfassung der Arbeit 40 7.3 Danksagung 41 7.4 Lebenslauf 42 7.5 Verzeichnis der wissenschaftlichen Veröffentlichungen und Vorträge 43