Polycystic Kidney Disease

Autosomal dominant polycystic kidney disease (ADPKD) is the most common inherited renal disorder, and is the fourth leading cause of end-stage renal disease in Canada.

ADPKD is a lifelong disease where patients develop clusters of cysts -- noncancerous round sacs containing water-like fluid. As time goes on, more cysts develop and the cysts grow in size. The disease course experienced by people living with ADPKD is quite variable, from minimal impact on kidney function to rapidly progressive disease that results in kidney failure at a young age.

There is no cure for ADPKD at this time, but research in recent years has led to improved tools for diagnosing and predicting the expected course of the disease, as well as treatment strategies that may slow the progression of ADPKD in some people.

As part of BC Renal's overarching priorities of optimizing patient experience and outcomes as well as innovation and research in renal care, we have developed and implemented a provincial ADPKD strategy in BC's renal programs that supports equitable and sustainable care for patients and families living with ADPKD.

This includes:

An ADPKD advisory group of interdisciplinary renal health professionals from across the province to support program development and implementation
A framework for delivery of best practices in ADPKD care within BC Kidney Clinics, which complements and enhances existing Kidney Care Clinic best practices
Educational tools and resources that support delivery of interdisciplinary ADPKD care in collaboration with other healthcare disciplines.
A comprehensive provincial registry of ADPKD patients that informs ongoing quality improvement and research efforts.
A dissemination strategy that supports BC Renal knowledge sharing and research efforts.

Learn more about ADPKD

If you would like to learn more about ADPKD, please visit the PKD Foundation of Canada's website. There you will find excellent information about PKD as well as opportunities to get involved in the exciting work done by this foundation to help improve the lives of all people living with PKD.

To learn more about living with ADPKD, please watch the 2019 Vancouver PKD Forum on the PKD Foundation of Canada's website:

Bevilacqua, M (date). ADPKD Patient Forum: Questions, Answers and Discussions about living with ADPKD [Video file]. Retrieved from here.

Managing my ADPKD

There is a lot that you can do to stay well, manage your ADPKD and protect your kidney function for as long as possible. Meeting with your kidney care team regularly and following their medical advice, dietary and exercise recommendations are the first steps in managing your own health.

For more information about managing ADPKD, click on the links below:

Managing Diet in ADPKD

Tolvaptan for ADPKD

A drug named tolvaptan is available for use in Canada for the treatment of Autosomal Dominant Polycystic Kidney Disease. Tolvaptan blocks a hormone called vasopressin which helps slow down the ADPKD disease process. Vasopressin does many things in the body such as helping it retain water. It is also one of many factors that leads to growth of kidney cysts in patients with ADPKD.

Like all medical treatments, there are advantages and disadvantages to using tolvaptan, and based on current studies, not all people with ADPKD are good candidates for treatment with this drug. If you have ADPKD, you and your nephrologist can discuss whether tolvaptan is a good treatment for you based on your individual characteristics. For more information on this drug, please download the 'Frequently Asked Questions' document on tolvaptan found below.

At this time, tolvaptan is not funded by either BC PharmaCare or BC Renal. Some private insurers may pay for tolvaptan when treatment is indicated; if you and your nephrologist are considering treatment with tolvaptan, this is something you can discuss. It is not unusual for a new drug not to be publicly funded right away. BC Renal is playing an active role in evaluating this drug, how it can be appropriately and equitably used and determining where it fits into the overall care of ADPKD in BC.

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