Treatment-related sexual problems are common, but understudied, among survivors of Childhood, Adolescent, and Young Adult Cancers (CAYACS). We investigated awareness of, and information needs regarding, sexual problems as late effects in a nation-wide sample of long-term CAYACS.Methods: Five-year survivors were identified by the Cancer Registry of Norway, diagnosed between 1985-2009 with any childhood cancer (aged 0-18 years, excluding CNS tumors), leukemia, colorectal cancer, breast cancer, non-Hodgkin lymphoma, or malignant melanoma (aged 19-39 years). Malignant melanoma survivors treated with local surgery only served as an unmatched reference group. Survivors were mailed a survey including items on awareness and information needs. Descriptive statistics and logistic regression analyses were used for data analyses.Results: Of 5361 CAYACS invited, 2104 responded (39%) of which 1870 were eligible for inclusion. In all, 62% were aware of sexual problems as late effects (46% aware only, 16% experienced it) and 31% reported information needs. Of all groups, childhood cancer survivors reported the lowest level of awareness (43% aware, 7% experienced it) and the highest information needs (38%). In multi-variable models, awareness was associated with higher education, shorter time since treatment, more intense treatments, and experiencing hormonal changes and reduced fertility. Information needs were associated with having experienced sexual problems, female gender, higher treatment intensity, chronic fatigue and increased depressive symptoms.
Conclusions:A substantial proportion of long-term CAYACS report being unaware of, and have information needs regarding, sexual problems as late effects decades beyond treatment.Addressing such issues during follow-up care is important.