About 50% of women lack the skills and capacity to access, understand and use health information effectively. Of concern are young women with breast cancer who are facing potential treatment induced infertility with low health-literacy (LHL). These women need access to high quality and accessible information in order to make informed oncofertility decisions. Current decision support in fertility preservation is not appropriate for LHL groups.
Aim: To develop an online LHL oncofertility decision aid (DA) for younger women with breast cancer and pilot test it among 30 Australian women previously diagnosed with breast cancer.
Method: The DA was developed using LHL principles. Women who were premenopausal (18-40 years) at diagnosis (6 months up to 5 years ago) of early stage breast cancer were recruited from the Royal Melbourne Hospital, the Royal Women’s Hospital and through Breast Cancer Network Australia. Participants were asked to complete survey 1, review the DA and complete survey 2.
Results: Twenty-six women enrolled and completed survey 1, 23 completed survey 2. Mean age was 37 years, mean age at diagnosis was 34 years, and 27% had LHL. Most (92%) had planned on having children or were unsure at diagnosis. Most (92%) recalled having an oncofertility discussion. All participants thought the DA was clear, good at giving information, useful, very easy to read, would have been helpful at the time of diagnosis, and 91% would recommend it to others. Knowledge scores significantly increased pre/post DA by a mean of 3 points (95%CI:2.2-3.7, p<0.05). No significant differences were seen in knowledge improvement between high/low literacy groups.
Conclusion: The DA was well received and significantly increased knowledge in women across low and high literacy groups. This data suggests that the DA is an equitable way to provide oncofertility support across health literacy levels, however a further evaluation is needed.