Fertility Information Perceptions and Needs of People with Cancer, Their Family Members, and Caregivers

Fertility loss affects up to 80% of cancer survivors, yet many do not have access to information about fertility risks and preservation options. While studies have noted the need for more fertility information and support for adolescents and young adults (AYAs) with cancer, no study has comprehensively assessed their fertility-related informational needs. We evaluated how AYAs and their family or caregivers perceived their fertility conversations with healthcare professionals, and assessed their need for medical, practical, physical, social, psychological, and spiritual information. An online, bilingual, cross-sectional survey was distributed via social media, targeting AYAs with cancer and their family or caregivers. Importance scores were calculated for each knowledge domain to assess what type of information was most important to participants. The relationship between participant characteristics and importance scores was evaluated using multiple regression. Different methods of information delivery were ranked according to participants' preferences within each domain. Most participants (59%) reported having "rarely/never" been spoken to about fertility by their healthcare providers. Participants assigned high importance to fertility information in the medical, practical, physical, and psychological domains, with younger participants assigning higher importance to medical and practical information. Across most domains, participants preferred to receive information through one-on-one teaching with a healthcare provider or via pamphlets. Together, our results show that fertility remains underdiscussed in cancer care, and that AYAs with cancer and their caregivers need more information and psychological support. These findings will inform the development of tailored resources for healthcare professionals and people with cancer.