An innovative network that BC Renal launched in 2015 to support patients across the province living with autosomal dominant polycystic kidney disease (ADPKD) has driven an increase in the number of ADPKD patients being identified early and receiving multidisciplinary care. The results of this initiative are described in a study published in July 2021 in the Canadian Journal of Kidney Health and Disease.
ADPKD is a condition in which the kidneys develop many cysts, eventually leading to kidney failure. The disease can progress slowly over time, but a large portion of patients often don’t receive care until the later stages of their disease.
A BC Renal working group endeavoured to improve the status quo for ADPKD patients by creating the new support network. “We recognize there are needs specific to people and families living with ADPKD, so we wanted to highlight and tailor care pathways around those unique needs,” explains Dr. Mike Bevilacqua, a nephrologist and ADPKD specialist with Fraser Health Authority who helped lead the project.
The network involves a three-pronged approach that targets health professionals, patients and system processes. First, measures are taken to better identify ADPKD patients who are only receiving care through a nephrologist. Those who qualify are then referred to one of 16 Kidney Care Clinics (KCCs) across the province, where they can receive more specialized, multidisciplinary care.
Over the first five years of the program’s inception, the number of patients with ADPKD receiving specialized care in a KCC jumped from 195 to 429 – a 220% increase. As well, the number of patients being cared for during the earlier stages of their disease (with GFR higher than 45) increased.
In addition, there are now resources tailored to patients and health professionals, which aim to increase knowledge and outline best practices for managing and treating ADPKD.
Bevilacqua notes that this network, which extends across BC, offers vastly different care to patients than what was available before the project was launched: “Ten years ago, if you wanted specialized ADPKD care, you would have to travel to one of just a few ultra-specialized clinics in the country, often far away. I’m very proud that we are able to offer these more specialized services closer to home for patients.”
As well, he points out that the network ensures that ADPKD patients always receive the most up-to-date care, which is especially important as new therapies emerge in the coming years.
A particularly successful component of the project has been the creation of new resources for patients, which were developed in partnership with the PKD Foundation of Canada, The Kidney Foundation of Canada, and a group of engaged patient partners. The resources provide in-depth information on topics such as pain, pregnancy and screening and testing.
Sharon Gradin is a project manager who co-led the ADPKD project. “Our patient partners have been with us every step of the way,” she says. “Because of their work, we’ve made something way better than anything we could have done on our own.”
A patient partner involved in the project, Elyse Gawley, says that she sees great value in these kinds of resources for people like herself living with ADPKD. “It can be difficult to find reliable information on the Internet,” she notes. “Yet it’s essential that patients educate themselves and become their own health advocates. The more educated patients are about the disease they have, the better outcomes they will have overall.”