“WHAT DO YOU WANT TO KNOW AND HOW DO YOU WANT TO KNOW ABOUT IT?” CONSUMER PERSPECTIVES OF PREGNANCY COUNSELLING AND EDUCATION IN WOMEN WITH KIDNEY DISEASE: A NATIONAL SURVEY

Stallard B1,2, Hewawasam E3,5, Jesudason S4,5

1Department of Nephrology, The Tweed Hospital, Tweed Heads, Australia, 2Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia, 3Australia and New Zealand Dialysis and Transplant (ANZDATA) registry, South Australian Health and Medical Research Institute (SAHMRI), Adelaide, Australia, 4Central Northern Adelaide Renal and Transplantation Service (CNARTS), Royal Adelaide Hospital, Adelaide, Australia, 5Faculty of Health and Medical Sciences University of Adelaide, Adelaide, Australia

Aim: To evaluate the perspectives and experiences of pregnancy education and information needs in women with chronic kidney disease (CKD).

Background: There is limited guidance on the best approach for pregnancy counselling for women with CKD and lack of research into women’s experiences with pregnancy counselling.

Methods: Women ≥18 years with CKD were invited via social media, patient and clinical networks to complete a national survey (December 2020 to April 2021) assessing their experiences and preferences of pregnancy counselling.

Results: Of the 71 women who participated, 73.1% were aged 25 to 45 and 59.1% lived in metropolitan areas. Discussions around pregnancy were often initiated by women themselves (57.4%) compared to their kidney specialist (27.7%). Of note, 14.8% received pregnancy counselling post-conception. Only 24.1% of women were very satisfied with their experience. Most women felt pregnancy discussions were stressful (66. 7%) and only 50% found these discussions useful in their decision-making. Only 53.7% reported feeling in control of their decision-making about pregnancy. Women described significant gaps in their counselling and reported receiving insufficient information about contraception (39.2%), medication safety during pregnancy (41.2%) and potential fetal complications (41.2%). The emotional and psychological impact of pregnancy was also not discussed (76.4%). Women preferred counselling from their nephrologist (74.7%) in a face-to-face setting (67.6%) but also stated online support groups (40.9%), websites (64.8%) and handouts (52.1%) would be useful.

Conclusion: Women with CKD have diverse experiences of pregnancy counselling, with essential information not being conveyed and reported loss of autonomy when making health decisions. Pregnancy planning discussions should be initiated early by nephrologists and be a key component of kidney care to improve women’s knowledge and assist shared decision-making.


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