WHAT DO WOMEN NEED TO KNOW TO MAKE INFORMED DECISIONS ABOUT FERTILITY PRESERVATION? A DELPHI ANALYSIS OF PROVIDER-RECOMMENDED KEY FACTS

Abstract

To support national guidelines that all reproductive-age women should be offered fertility counseling prior to starting cancer treatment, this study sought to identify the key facts newly-diagnosed female cancer patients should know to make an informed decision about fertility-preservation. Pilot Study. Challenging Choices: Understanding the Specific Fertility Needs of Providers and Newly Diagnosed Female Cancer Patients in High and Low Resource Settings was a clinical pilot study completed at MD Anderson Cancer Center and the Harris County Health System to understand and address gaps in fertility preservation counseling. A portion of the study involved engaging oncologists (medical, pediatric, young adult, and gynecologic) and reproductive endocrinologists in a Delphi survey. Providers completed three rounds of online questionnaires, with anonymized results that were reviewed and revised between rounds. Round 1: provider perception of fertility preservation counseling in a low resource setting. Round 2: A) a fertility facts quiz and B) ranking of facts in order of importance. Facts with more than 5 providers choosing “strongly agree” were retained for round 3. Round 3: provider ranking of most important final “key facts” (6 total). The majority of the 33 providers were female (73%) with mean age of 51 years old. Overall, 34 reproductive endocrinologists and 25 oncologists were polled. The majority (80%) of providers agreed that newly diagnosed female cancer patients of reproductive age should be counseled on fertility preservation options regardless of parity, partnership or financial status, or literacy level. The top ranked key-facts were: 1) Many cancer treatments can lead to infertility (the inability to get pregnant), 2) Fertility preservation should be done before starting cancer treatment, 3) Freezing eggs takes about 2 weeks, 4) If your insurance does not fully cover fertility preservation, there may be funds available through your employer (eg Johnson and Johnson, Starbucks) or other organizations (i.e. LIVESTRONG Fertility or Walgreens/Ferring Heart Beat Program) 5) Fertility preservation does not increase the risk of cancer recurrence in the future, and 6) If you choose not to do fertility preservation before cancer treatment, you can consider other family building strategies (i.e. adoption, fostering, third-party options) later. Providers confirmed the importance of fertility preservation counseling for all reproductive-age women with cancer prior to initiation of treatment. Before deciding about fertility preservation, women should understand these key facts – infertility is a risk, preserve before cancer treatment (takes 2 weeks) if possible, confirm insurance coverage (or apply for funding), no increase in future cancer risk, and there are alternatives for family building. These facts may be used to guide shared decision making discussions, develop measures (knowledge tests, decision quality indices), design tools (patient decision aids), and inform reimbursement policies for high quality comprehensive cancer care.