Experiences, Knowledge Gaps and Information Needs of Women in Australia with Transfusion Dependent Thalassaemia in Regard to Fertility and Pregnancy

OBJECTIVES: Transfusion dependent β-thalassaemia can have significant effects on fertility and is also associated with significant risks in pregnancy. However, little is known about the perspectives of women living with the condition with regards to reproductive issues. The aim of this study was to assess the experience, knowledge and information needs of Australian women living with transfusion dependent β-thalassaemia in relation to fertility and pregnancy. METHODS: A cross sectional study using an online anonymous survey, self-administered through REDCap, addressing key issues related to the experience, knowledge and information needs of women with transfusion dependent β-thalassaemia. Descriptive and inferential analysis was conducted using STATA. RESULTS: Sixty participants were included in the analysis. Two-thirds of sexually active, pre-menopausal women were using contraception. Just under half of the participants who were sexually active had children and half had required some form of assisted reproductive technology to achieve a pregnancy. Less than half identified the importance of contraception as part of ensuring optimised pre-pregnancy care, and less than half had accessed pre-pregnancy care. Although there was good understanding of the increased risk of infertility and pregnancy complications, the specific risks and causes of these risks were poorly understood. Around half of the participants indicated they wanted more information on these medical issues. CONCLUSIONS FOR PRACTICE: Our study demonstrated significant concerns and knowledge gaps in Australian women with transfusion dependent β-thalassaemia with regards to disease-specific issues related to fertility and pregnancy, and a desire for related patient information. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s10995-023-03683-8.