A new tool to help women with a common form of genetic kidney disease navigate their journey towards motherhood has been developed by Western Health and Deakin University.
Polycystic Kidney Disease (PKD)is the most common genetic disorder of the kidneys.
Approximately 25,000 Australians will be diagnosed in their lifetime.
The illness becomes worse over time as cysts form and enlarge both kidneys.
Treatment often requires dialysis, which supports the kidney to perform their vital function within the body, or transplantation.
Women with PKD often find it difficult to access information and have discussions with their health care providers about pregnancy and childbearing.
“Most women with the disease will have healthy pregnancy and babies,” lead researcher Dr Sara Holton, from Western Health and Deakin University said.
“However, we also know the condition is associated with a higher risk of complications for mothers and their babies and requires planning and management of their condition.”
“Given these possible complications, routine communication about childbearing between women with PKD and their treating team is important.”
Dr Holton led a research project that involved developing a question prompt list (QPL), which is a structured list of questions used by patients during consultations with healthcare providers.
“We thought this tool may be beneficial in assisting women with PKD to discuss their childbearing concerns with, and seek related information from, their treating team.”
Dr Holton co-designed and tested the list of questions with of 23 women of a reproductive age living with PKD in Australia.
“Women with PKD wanted support with four topics: thinking about having a baby, pregnancy, medications and after the baby is born.
“We worked together to develop a series of questions that women could use to prompt discussions with their healthcare providers,” Dr Holton said.
The study, recently published in the journal of BMC Pregnancy and Childbirth, found that the tool helped women with PKD to access information more easily about pregnancy and childbearing.
It also assisted them to ask health professionals targeted questions, so they could make informed decisions about pregnancy and childbearing.
“Many women in the study would prefer to receive a question prompt list like this at diagnosis, which may reflect women’s desire to know about the implications of their condition and its treatment on other aspects of their lives at the time of diagnosis.”
Dr Holton said it could be a useful resource for patients to receive from their GP or nephrologist, or a patient support group.
Further research is required to test the effectiveness and feasibility of the question prompt list in clinical settings.
The research was supported by a Polycystic Kidney Disease Australia Grant in 2022.
Read the peer-reviewed research.