An evaluation of oncofertility decision support resources among breast cancer patients and health care providers

BACKGROUND: Cancer patients of reproductive age are at risk of infertility as a result of their treatment. Oncofertility decision support resources can assist patients with fertility decision-making before treatment yet available oncofertility resources contain varying levels of detail and different fertility options. The key information/sections needed in oncofertility resources remain unclear. To explore the information needs for oncofertility decision-making before cancer treatment, we aimed to evaluate existing oncofertility decision support resources with breast cancer patients and providers. METHODS: We conducted 30 to 90-min interviews that included a survey questionnaire and open-ended questions with patients and providers between March and June 2016. Interviews were transcribed verbatim. Analysis involved descriptive statistics for survey responses and thematic analysis of qualitative data. RESULTS: A total of 16 participants completed interviews. Key information perceived by most participants as necessary for fertility decision-making included tailored post-treatment pregnancy rates, cost ranges and financial assistance for the fertility options based on patients’ situation. However, patient and provider participants expressed differing opinions on the inclusion of all before and after treatment fertility options and the amount of fertility information required at diagnosis. CONCLUSION: The evaluation identified fertility information needs among patients in addition to providers’ views on patient needs. While existing oncofertility resources contain information perceived as necessary for decision-making there is an opportunity to use these findings to create or enhance resources to better meet the needs of patients. Additionally, patients and providers differing views on information needs highlight the opportunity for provider training to ensure better communication using resources in clinic to understand specific patient needs. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12913-019-3901-z) contains supplementary material, which is available to authorized users.