WHAT FACTORS INFLUENCE THE FERTILITY PRESERVATION TREATMENT DECISION-MAKING PROCESS IN WOMEN WITH CANCER? THE QUALITATIVE FINDINGS OF THE PREFER STUDY

Purpose: To understand the factors that influence the fertility preservation (FP) decision-making process for women of reproductive age with cancer.

Method(s): A single centre, prospective, mixed-methods study, over 30 months. Fifty-eight women aged between 16-40, attending a cancer hospital with a new diagnosis of cancer were recruited. Thirty-four women, decided not to preserve their fertility in oncology (Group 1). Twenty-four women were referred to the fertility expert (Group 2). Data was collected using patient-reported outcome measures which were administered at baseline, pre-and-post fertility consultation (T1 & T2) and post cancer treatment (T3). A subsample (n=15) also took part in a qualitative interview. The interview transcripts were coded by two members of the study team using NVivo and analysed using a thematic approach.

Result(s): In Group 1, reasons for declining a referral to the fertility expert were i) already completed their family (44%), ii) worried about future survival/delaying cancer treatment (18%), iii) too old for FP treatment/subsequent pregnancy (18%), iv) never wanted children (12%), iv) had an oestrogen positive cancer (3%), vi) not told/given the option of FP (3%).

The mean age of the women in Group 2 was 29.2 years, range (16 - 39 years). These women had breast cancer (60.9%), lymphoma (17.4%), sarcoma (4.3%) cervical (4.3%) rectal (4.3%) brain (4.3%) and tonsil cancer (4.3%). Median time of referral from oncology to the fertility expert was 7 days (range 1 – 29 days). Sixteen women preserved their fertility; six opted for oocyte freezing, seven embryo freezing and three both. The qualitative analysis revealed that the main reason hindering the FP decision was the lack of FP treatment information received at the point of diagnosis/treatment planning stage in oncology. Other reasons included age, costs, having a hormone sensitive and/or aggressive cancer, time pressure to make the decision and/or start cancer treatment, perceived risks around delaying cancer treatment, not feeling re-assured by clinical advice, fear of the FP treatment and uncertainty over IVF success rates.

Conclusion(s): Women wanted to receive some specialist FP information sooner and in the context of their cancer care, in advance of seeing the fertility expert. These findings are informing the development of a FP decision aid for use in oncology to better support and prepare women needing cancer treatment with fertility decisions.