Disparities in access to fertility care in women with a hereditary predisposition to gynecologic malignancy: a qualitative study

Objectives: Reproductive age women with a genetic predisposition to the development of gynecologic malignancies are frequently faced with important and time-sensitive decisions regarding their future fertility. The majority of these patients will need to pay out of pocket for their fertility care due to a substantial lack of insurance coverage for these services. The purpose of this study is to explore and draw attention to the mental and emotional impact of navigating the various barriers involved in accessing fertility care. Methods: We identified nulliparous women of reproductive age with BRCA1/BRCA2 mutations or Lynch syndrome who have not yet undergone risk reducing surgery. All patients were privately insured. A small volume of patients with a broad variety of experiences were recruited, utilizing maximum variation sampling. One-on-one interviews were performed using the assistance of an Institutional Review Board-approved semi-structured interview guide with prompts created specifically for this project. A total of eight in-depth interviews were performed after which data saturation was reached. Interviews were audio recorded then transcribed. Transcriptions were coded line-by-line with significant quotations grouped into common themes. Quotations were included in thematic analysis if they were independently coded as significant by > or = 2 reviewing investigators. As new themes emerged, earlier transcripts were recoded as necessary. Results: Eight patients (age range: 29-39) from various practice settings with diagnoses of BRCA1, BRCA2 or Lynch syndrome were interviewed. Three primary themes emerged: injustice with regard to lack of insurance coverage, disappointment with barriers to achieving desired level of care, and despair due to lack of support with complicated healthcare coordination. Patients expressed feelings of anger and frustration that fertility care is not routinely covered by insurance for women in their circumstances. The majority verbalized that fertility care should be considered part of their preventative care as it inherently affects the timing of their decision to pursue risk reducing surgery to prevent cancer. Some also feel a great sense of moral responsibility to avoid passing their affected genes to their children; without assisted reproductive technology they feel that this is out of their control and unacceptable. The majority expressed disappointment at having to potentially compromise or sacrifice long-held family planning ideas. A broader, more common theme was highlevel anxiety and despair related to an overwhelming sense of personal responsibility for coordinating their own care. Representative quotes by theme are shown in Table 1. Download : Download high-res image (243KB) Download : Download full-size image Conclusions: The lack of insurance coverage for fertility preservation in reproductive age women with a hereditary predisposition to malignancy causes emotional and mental stress for patients who are already overwhelmed with many appointments, screenings and difficult time-sensitive decisions. These findings draw attention to a need for a more comprehensive approach to care in this specific subset of patients, including fertility preservation as a priority if desired.