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

Abstract

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.

The importance of fertility preservation in cancer patients

“…Exactly how women feel about delaying anti-cancer treatment for several weeks in order to undergo fertility preservation is not clear, but we know that the way in which health professionals present information to women has a significant bearing on how they view their fertility preservation options and whether they are ready to accept them [18]. Often health professionals stress the life-saving nature of treatment and paint a picture of survival as the paramount objective, with future fertility of secondary importance.…”

A Review of the Oncology Patient's Challenges for Utilizing Fertility Preservation Services

“…There is also limited information that demonstrates effective counseling for fertility preservations for procedures other than sperm cryopreservation. 6,38,47,66,67 Much of our understanding in this area relies on retrospective studies exploring patient's desires only after initiation of cancer treatment. 3,4,6,14,21,68,69 These past studies identified psychological reactions and suggest informational needs but provide us with little data regarding patients' views on future fertility at the time of diagnosis.…”

“…28 For men, sperm cryopreservation is a relatively simple and affordable procedure; therefore, fertility preservation can be easily integrated into their treatment process. Although even with sperm cryopreservation considered a standard for male 38 FLINK ET AL.…”

“…In addition, there was no formal referral process to a reproductive specialist. 38 Patients report a better understanding of their treatment options for future fertility after a fertility consultation with a reproductive specialist. 39 For instance, Reh et al found that 89% of patients proceed to some form of fertility preservation after a formal consultation with a reproductive medicine specialist.…”

“…51 Further contributing to the lack of participation in one's fertility decisions are gender disparities that exist in patients receiving fertility information. 38 Since few women are receiving fertility information, females are provided little opportunity to participate in decisions about their future fertility, thus robbing them of their desires for children and normal lives after cancer. Both genders have expressed a poor understanding of their fertility risks and their treatment options; thus all adoloscents would benefit from a fertility preservation consultation.…”