Understanding Fertility Attitudes and Outcomes Among Survivors of Adolescent and Young Adult Cancers in a Low-Resource Setting: A Registry-Based Computer-Assisted Telephone Interview Survey

J Adolesc Young Adult Oncol. 2023 Aug;12(4):520-528. doi: 10.1089/jayao.2022.0114. Epub 2022 Dec 28.

Abstract

Purpose: To establish the extent of self-reported reproductive failure associated with cancer treatment, and attitudes toward fertility among adolescent and young adult (AYA) cancer survivors in Uganda. Methods: A registry-based computer-assisted telephone interview survey was conducted in Uganda. The survey population were survivors of childhood, adolescent and early adulthood cancers diagnosed between 2007 and 2018. The survey explored fertility outcomes, experiences of oncofertility and fertility attitudes of AYA cancer survivors. Results: Thirty-four (female = 14 and male = 20) interviews were completed. Survivors were 18-35 years of age. The median age at cancer diagnosis was 23.5 for females and 17.5 for males. Kaposi's sarcoma contributed to 44% of primary cancer diagnoses. All the survivors had received chemotherapy alone or in combination with other modalities and 79% of survivors had not received satisfactory information about future fertility before cancer treatment. Twenty one percent of males and 46% females met the criteria for infertility and 60% of these had met this criterion after their cancer diagnosis. Eighty two percent wanted to raise a biologically related child. Forty seven percent would be dissatisfied with their lives if they were unable to have a child or additional children. Conclusion: AYA cancer survivors in this low-resource setting reported reproductive failure, despite a strong fertility desire. Information and counseling provided on therapy-related problems before cancer treatment was insufficient and reinforces the need to build capacity for oncofertility resources within the region.

Keywords: AYAs; CATI; Uganda; low-resource; oncofertility; survivorship.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, N.I.H., Intramural

MeSH terms

  • Adolescent
  • Adult
  • Attitude
  • Child
  • Computers
  • Female
  • Fertility
  • Fertility Preservation* / psychology
  • Humans
  • Male
  • Neoplasms* / psychology
  • Registries
  • Survivors / psychology
  • Telephone
  • Young Adult