How Do Young Women with Cancer Experience Oncofertility Counselling during Cancer Treatment? A Qualitative, Single Centre Study at a Danish Tertiary Hospital

SIMPLE SUMMARY: Adolescents and young adults (AYAs) diagnosed with cancer undergo a range of cancer treatments with intension of being cured. It is well-documented that cancer treatment induces a risk of infertility due to ovarian damage. In recent years fertility preservation options for female AYAs with cancer have developed with opportunities for pregnancy after completion of cancer treatment. Despite international guidelines, a high level of evidence underpins the insufficiency of fertility counselling towards this patient group. The aim of this qualitative study was to examine the experience of fertility counselling from the AYAs perspective, and we strive to increase the attention towards the need of improvement and developing national guidelines at international level to ensure adequate and uniform fertility information. ABSTRACT: Background: Adolescents and young adults (AYAs) with cancer are at risk of therapy-induced infertility. The importance of initial and specialized fertility counselling to this patient group is undisputed. Despite international guidelines, oncofertility counselling is still inadequate. The purpose of this study was to examine how female AYA cancer patients and survivors experienced initial and specialized oncofertility counselling, and to present their specific suggestions on how to improve the oncofertility counselling. Methods: Twelve individual semi-structured interviews were performed with AYAs aged 20–35 with cancer or who were survivors. Participants were recruited via a youth support centre and social organization for AYAs with cancer. Data was analysed using thematic analysis. Results: Three main themes were found: Support is needed for navigating the fertility information jungle; The doctor’s approach determines the content of the patient consultation; Inadequate and worrying information causes mistrust and frustration. Conclusion: Results indicate a continuing problem regarding insufficient oncofertility counselling to AYAs with cancer. To ensure adequate and uniform information, especially in the initial oncofertility counselling, national guidelines for oncology specialists are suggested including multidisciplinary effort and collaboration between oncology and fertility specialists in mind. In addition, participants suggest focus on communication skills.