Welcome to the first edition of The Kidney Quarterly, a new publication dedicated to stories that highlight the Can-SOLVE CKD Network’s impact on Canadian kidney health research.
We are pleased to launch this publication on March 11, which is World Kidney Day. 2021 has been declared the year of “Living Well with Kidney Disease” with a particular focus on increasing education and awareness about effective symptom management and patient empowerment.
The Can-SOLVE CKD Network is committed to helping patients live well with kidney disease by supporting research and resources that improve quality of life and lead to better health outcomes. We are proud to be advancing a culture change in research that puts patients at the centre and focuses on finding the innovations that will help them live well with kidney disease.
New Tool Provides Unprecedented Self-Management Support
This year’s theme for World Kidney Day, “Living Well With Kidney Disease,” is extremely important given the extent to which patients are required to manage their own care on a daily basis. Living well with kidney disease means managing dietary needs, mental health, medications and more – all of which can vary greatly for each person.
One Can-SOLVE CKD initiative, launched on World Kidney Day 2021, aims to support patients in living their best lives. After a few years of development, the research team is ready to unveil its new online self-management tool: My Kidneys My Health.
The interactive website covers all of the most important self-management topics identified by kidney patients and professionals. This includes information about kidney disease, diet, medications, symptoms, mental and physical well-being, finances, work and education, and travel. What’s more, the website allows patients to create their own, individualized self-management notes – for example, questions to bring up with their health care professionals.
As with all Can-SOLVE CKD projects, patient partners were heavily involved in the design and implementation of My Kidneys My Health. This includes Dwight Sparkes, whose first-hand experience highlights why the tool is important.
Members of the research team responsible for the My Kidneys My Health website
Six weeks after Sparkes had a kidney biopsy in 2014, his doctor diagnosed him with chronic kidney disease. “My head just started spinning,” says Sparkes. “[My doctor] said, well I want you to cut out salt, and he sort of sent me on my way.”
Over the next three years, Sparkes learned the ropes of living well with kidney disease. In 2016, he had the opportunity to join the team behind My Kidneys My Health and instantly realized the importance of the project. Whereas Sparkes had to go to multiple sites to collect disjointed bits of information, he describes My Kidneys My Health as “one-stop shopping” for living well with kidney disease. “It’s a comprehensive self management tool designed by patients for patients,” he explains, noting that he wishes he had access to such a site in the early days following his diagnosis.
To get started in creating the tool, the research group conducted an environmental scan of the self-management support already available to patients in order to identify gaps in support. As well, they convened a group of patients, caregivers, and health professionals (nurses, dietitians, pharmacists, policy-makers, primary care physicians, social workers, and nephrologists) to identify content and other features that should be included in the tool.
“The whole reason I got involved with Can-SOLVE CKD is to improve the lives of people with kidney disease, and I think this website is going to go a long way to achieving that.”
Dwight Sparkes, Patient Partner
The workshop was a valuable opportunity to understand the self-management priorities of patients. “They told us that they wanted support through education on specific topics, [links to tangible support resources], and a mode of delivery that is accessible, relevant, timely and tailored,” explains Dr. Maoliosa Donald, a lead researcher involved in the project.
She notes that, as a result of this detailed approach to developing My Kidneys My Health, the tool has succeeded in addressing a lot of self-management gaps, including: some topics that aren’t covered on other websites, a mental health screening tool, and interactive media, including videos.
Before the tool was officially launched, it had already been gaining in popularity. Paul Watson, 62, has lived with polycystic kidney disease – a condition with difficult symptoms to manage and an uncertain prognosis – for his whole life. When he heard about the My Kidneys My Health project on Twitter, he enthusiastically reached out to the group and joined as a patient partner.
“I spend a lot of time between doctors’ appointments Googling for answers, or at least a hint of what to expect at the next turn,” explains Watson, noting how hard it can be to understand what information on the Internet is good or bad.
“I wanted to help with this website because it has enormous potential as a gathering place for patients and medical professionals to share reliable information on a broad range of subjects,” he says. “I hope it will help ease a lot of suffering.”
Sparkes is also excited about the potential for My Kidneys My Health to have a positive impact. “The whole reason I got involved with Can-SOLVE CKD is to improve the lives of people with kidney disease, and I think this website is going to go a long way to achieving that,” he says.
Although World Kidney Day marks the official launch of My Kidneys My Health, the team will be continuing to explore ways to improve the tool. Donald says, “We are looking at potential changes that would address feedback from study participants, such as integrating culturally specific information, linking with peer support programs, and hopefully continuing to expand on the website’s interactive features.”
Gwen Herrington Discusses the Importance of Self-Management
“I want to be a part of curing kidney disease, preventing progression, [finding] effective treatments and making dialysis a better experience for people who have to be on it.”
Over the last 13 years, Gwen Herrington has experienced many stages of kidney disease and treatment – from an initial diagnosis in 2008, to dialysis in 2012, and finally, a kidney transplant in 2014.
Receiving a kidney transplant was a critical turning point for Gwen, but it isn’t the end of her kidney journey. “I’m in effective treatment, but the idea of going back on dialysis still haunts me,” she says. “I want to be a part of curing kidney disease, preventing progression, [finding] effective treatments and making dialysis a better experience for people who have to be on it.”
She joined Can-SOLVE CKD in 2016 and has been a valuable patient partner ever since. All Can-SOLVE CKD projects have been selected based on the priorities of kidney patients, but Gwen is a patient partner lead on one project that is particularly important for patients on a daily basis: the “Strategies to enhance patient self-management of CKD” research project.
Kidney disease is complex, and so too can be the self-management strategies. “There is much to learn about diet, medication and so much more. It is often overwhelming,” explains Gwen.
After many years of careful design and consultation with patients, including Gwen, the self-management research team has launched the My Kidneys, My Health website to support kidney patients with self-management.
The online platform allows patients to explore content on their own terms and use personalized tools on the website to support their individual self-management needs. Gwen sees much value in this approach. “I believe that being ‘told’ what to do is less effective than my ‘choosing’ what to do,” she says.
Gwen emphasizes how hard her dialysis experience was, noting that her ability to function in life was drastically affected. This experience underscores the importance of self-management and, for Gwen, the importance of being involved in kidney research.
Her advice is, “Learn as much as you can, take charge of your decisions supported by this. Connect with other kidney patients and be involved in research.”
Gwen Herrington shares her personal story with attendees at the 2018 SPOR Summit.
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Research with Impact
We are creating new knowledge about kidney disease to answer patients’ most important questions.
One of the key themes prioritized by patients is identifying new strategies to manage symptoms and improve overall quality of life. In recognition of World Kidney Day 2021, we are pleased to share a few of the innovative Can-SOLVE CKD projects that are helping patients live well with kidney disease.
Issue: Dialysis patients often require complex care and are faced with unique challenges.
Innovation: The team conducted extensive surveys and interviews to identify the top ten challenges facing hemodialysis patients. Now, they are testing several solutions, including an app-based platform to help patients navigate key educational material.
Impact: The solutions piloted in this project will increase patients’ quality of life by providing better information, improved interactions with their health care team, and individualized care.
Issue: Dialysis patients have the highest pill burden of all chronically ill patient populations, at an average of 12 medications per day, and up to 70 per cent of these medications may be inappropriate.
Innovation: The team has developed and validated a new algorithm for identifying unnecessary medications taken by dialysis patients and ways to reduce these prescriptions over time.
Impact: A patient-centred solution to avoiding potential harms related to the use of inappropriate medications in patients on hemodialysis.
Donald M, Beanlands H, Straus SE, Smekal M, Gil S, Elliott MJ, Herrington G, Harwood L, Waldvogel B, Delgado M, Sparkes D, Tong A, Grill A, Novak M, James MT, Brimble KS, Samuel S, Tu K, Farragher J, Hemmelgarn BR
Rossum K, Finlay J, McCormick M, Desjarlais A, Vorster H, Fontaine G, Talson M, Ferreira Da Silva P, Soroka KV, Sass R, James M, Tong A, Harris C, Melnyk Y, Sood MM, Pannu N, Suri RS, Tennankore K, Thompson S, Tonelli M, Bohm C
Canadian Journal of Kidney Health and Disease, 2020
We asked patients to share with us – and the world – an image or a story that illustrates how they continue to thrive while living with chronic kidney disease. Here’s what they had to say.
“The one thing I can say after being diagnosed with polycystic kidney disease (PKD) in 1974 and living the life of someone that has experienced all kind of things related to (kidney disease), patients must have a positive attitude to carry on! Nobody ever told me it would be easy!… I am 66 years old and truly blessed by my family and dear wife Audrey.” – Robert (Buzz) Buzinski, Medicine Hat, AB
“I really enjoy getting out and exploring wherever I am. Living well with CKD involves keeping in shape so I can continue to enjoy my explorations.
My daughter and I have always done ‘girls’ weekends, mostly to the mountains. We both value these occasions and have become an incentive to keep as healthy as possible but be mindful of my physical limitations.” – Loretta Lee, Edmonton, AB
“The picture was a walk we participated in supporting kidney health through the Kidney Foundation of Canada. Walking together and meeting everyone was a great way to exercise and share stories about our kidney journey and transplantation.” – Mary Smith, who is a kidney donor for her son, Chris Smith (pictured), Tiny, ON
“After I got sick in 2014, I had to take a year off of training. This photo was taken soon after I went back. I got my black belt in Aikido in 2018 and I continue to practice to this day. This is my living well with kidney disease.” – Dwight Sparkes, St. John’s, NL
“Living well with kidney disease has allowed me to travel and enjoy different experiences. I especially enjoy travelling across the country. With my transplant, I have the freedom to come and go, and I take my meds on time.” – Mary Beaucage, Nipissing First Nation, North Bay, ON
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Patient Engagement in Action
In a new video, researchers and patients from across the Can-SOLVE CKD Network reflect on the lessons, opportunities, and challenges of patient engagement in kidney research. The video was created for the 2021 International Society of Nephrology Community Film Event in the hope of inspiring others in the global kidney community to embrace the value and wisdom that patients bring to research.