Women living with chronic kidney disease (including lupus nephritis) often face complex decisions about becoming pregnant. Approximately 30-60% of people living with lupus will experience kidney involvement and some may go on to need dialysis or have a transplant.
Decisions about pregnancy are complex and emotive, and for women with lupus nephritis, pregnancies need to be carefully planned and monitored. Medications may need to be stopped or altered well in advance of pregnancy. There is also a risk that the pregnancy may cause a flare of disease and preterm delivery and complications for mother and baby can be a concern.
We know very little about how women with with chronic kidney disease may make decisions affecting family planning and pregnancy, their needs in terms of psychological and social support, and understanding how they weigh up the pros and cons of starting a family.
Wales Kidney Research Unit are undertaking a study to learn more about women’s experiences of kidney disease, decisions about having children and their experiences of pregnancy and having children. Findings will help them to develop new shared decision making tools to help better support women with the sometimes complicated and emotional decisions they may need to make about having children.
If you are a woman with kidney disease, aged 18-50 living in the UK we invite you to take part and share your views. Taking part involves completing an online survey, with the option to share details for a potential follow-up interview. The study is open from 1st September 2020 to 31st August 2021.
The online survey takes around 20-25minutes to complete:
If you need more information about pregnancy or kidney disease in lupus, please take a look at our booklets: