Background
Knowledge about best approaches for pregnancy counselling in women with chronic kidney disease (CKD) and their experiences is currently limited.
Methods
A national survey assessing experiences and preferences was promoted to women ≥18 years with CKD of any stage via social media, patient and clinical networks (Dec 2020 to April 2021).
Results
A total of 71 women participated, 73.1% of women were aged 25 to 45, majority were from an English-speaking background (81.6%) and living in a metropolitan area (59.1%). Discussions around pregnancy were most often initiated by women themselves (57.4%) compared to their kidney specialist (27.7%). Of note, 14.8% of respondents stated they had only received pregnancy counselling after they became pregnant. Women felt very comfortable (50.7%) or comfortable (32.4%) to have pregnancy discussions, however reported discussions were stressful (66.7%). Only 13 women were very satisfied (24.1%) with their experience and only 53.7% of women reported feeling in control of their decision-making during pregnancy. Over a third of women did not receive information on contraception (39.2%), potential foetal complications (41.2%) and the safety of medications during pregnancy (41.2%). Women preferred to receive face-to-face counselling (67.6%) by their nephrologist (74.7%) but also reported handouts (52.1%), online support groups (40.9%) and pregnancy counselling websites (64.8%) would be useful.
Conclusion
Women with kidney disease have had diverse experiences of pregnancy counselling, with essential information not being conveyed and reported loss of control of health decisions. Women prefer face-to-face counselling and desire access to evidence-based resources to improve their knowledge and assist their decision making.