Factors affecting decision making about fertility preservation after cancer diagnosis: a qualitative study.

Objective: To increase our understanding of factors underlying the decision to store gametes after the diagnosis of cancer.

Design: Qualitative interview study.

Setting: Andrology, Haematology, and Oncology Departments of a Scottish teaching hospital, and patients' own homes.

Population: Sixteen men and 18 women aged 17-49 years recently diagnosed with cancer; 15 health professionals concerned in cancer care.

Methods: Audio-recorded semi-structured interviews were transcribed verbatim and analysed thematically. Topics included perceptions of diagnosis; prognosis; future reproductive choices; priorities; quality of information received; communication and decisions made about future reproductive choices; and the role of partners, family, friends and healthcare professionals. Professional interviews examined their role in decision making and that of protocols and guidelines, together with information emerging from patient interview analysis.

Main Outcome Measure: Themes identified following analysis of interview transcripts.

Results: The primary barriers to pursuing fertility preservation were the way in which information was provided and the 'urgent need for treatment' conveyed by staff. Survival was always viewed as paramount, with future fertility secondary. Sperm banking was viewed as 'part and parcel' of oncology care, and the majority of men quickly stored sperm as 'insurance' against future infertility. Few women were afforded the opportunity to discuss their options, reflecting clinicians' reservations about the experimental nature of egg and ovarian tissue cryopreservation, and the need for partner involvement in embryo storage.

Conclusions: Significant gaps in the information provided to young women diagnosed with cancer suggest the need for an early appointment with a fertility expert.