As a nursing student, Kara was hit by a car while riding her bicycle (pictured), which she kept and fixed up.
Just as Kara Schick-Makaroff was wrapping up her first year of nursing studies, her life changed in an instant.
“I was hit by a car while riding my bicycle,” she explains. “My head went through the windshield and my back was broken—along with a slew of other things. The helmet saved my life and I was one of those walking miracles. It’s amazing I’m not a quadriplegic or paraplegic.”
That summer, Schick-Makaroff’s dream of being a pediatric nurse shifted to not even knowing if she could even continue in the nursing program.
“Everything changed,” she says, “Absolutely everything. My healthcare team—from physicians to physiotherapists—held a family conference and recommended I enter a year-long rehabilitation clinic program. They weren’t even sure if I’d be able to finish university.”
It was a defining moment for Schick-Makaroff, and she knew she needed to at least make an effort to continue with her schooling.
“I just couldn’t envision my life without university education. I had to plant a flag in the sand and say, ‘I have to see if I can do this.’”
She returned to school that September with both arms in casts, due to carpal tunnel, and was afforded special accommodations at her clinical placements.
“Even though you would look at me and think that I was fine, I struggled,” she elaborates. “The accident caused extensive nerve and soft tissue damage in my spine and in my back, which impacts how I work, even now.”
Two decades, three degrees (including a PhD in nursing) and a four year postdoctoral fellowship later, Schick-Makaroff has shown her persistence, while proving her health care practitioners wrong.
“You just never know what you’re capable of,” says Schick-Marakoff, who kept and fixed up the bicycle she was riding when her life changed in the blink of an eye. Over the last 21 years she’s lugged it from Saskatoon to Victoria to its current home in her Edmonton garage.
But it wasn’t only her career trajectory that was impacted by Schick-Makaroff’s accident; it ultimately shaped her research and how she approaches it.
“I’ve spent many, many years navigating the healthcare system as a patient, as a nurse and also as a family caregiver,” she says. “My dad dealt with multiple myeloma for 12 years before he died in 2016. When you have that many interactions with healthcare, your research in that system is definitely influenced.”
A phrase that resonates with Schick-Makaroff is one she encountered during her master’s research on nurses with disabilities: Nothing about us without us.
“At the core, it basically means that if you’re doing research that’s intended to help the people who are living it, then they should be a part of that research,” she explains.
Schick-Makaroff knows from her own experiences that patient engagement and patient-oriented research are no longer an abstract concept when you actually are a patient.
“Involving patients in research brings balance to the conversation and to the direction of the research, and at an aggregate level, it addresses patients’ priorities.”
And it’s a concept that’s woven throughout her research, which focuses mostly on life-limiting illnesses, specifically chronic kidney disease.
An invisible disease
Kidney disease is the 10th leading cause of death in Canada, with the number of patients treated for kidney failure tripling in the past two decades.
“Kidney disease is one of those diseases that isn’t really in the public eye, but it’s a huge one that significantly impacts peoples’ views of their health, emotions, work, and relationships,” says Schick-Makaroff, an assistant professor with the faculty of nursing. “It impacts all aspects of life, and there’s no cure.”
With five stages of chronic kidney disease, its diagnosis frequently goes undetected during the early stages because the signs and symptoms are often invisible. By the last stage—end-stage kidney disease—dialysis, transplantation or conservative care is required.
The financial cost of hemodialysis to the system is staggering. More than 40,000 Canadians currently receive hemodialysis, at a cost of $100,000 per year per patient, with less than 43 per cent of patients surviving after five years of treatment.
“The life expectancy of those with end-stage kidney disease is less than that of individuals with breast, colorectal or prostate cancer,” notes Schick-Makaroff. Even more remarkably, dialysis patients over the age of 65, have a mortality rate that is three times as high as those living with cancer.
Surprisingly, patient engagement and patient-oriented research is somewhat of a novel idea in the world of kidney research.
“A strong majority of the work being done is bench research, with a focus on systems biology, proteomics, DNA, genetics, and that sort of thing,” explains Schick-Makaroff. “Where’s the patient in that? Most patients wouldn’t even know how that relates to them or anything that’s important to them. And kidney scientists are just now starting to look for ways to engage patients in this type of research.
But patient engagement and patient-oriented research are coming into the academic lens, thanks in part to major funding bodies—like the Canadian Institutes of Health Research (CIHR)—putting it on the main stage.
At its core, patient-oriented research means that patients are involved throughout the research process. By taking patient priority into consideration and involving patients throughout the different steps of research, a new degree of patient engagement is reached.
Canadians living with kidney disease were asked about their research priorities and what they thought should be addressed.
“Previously, research focused on things like mortality and calcium binders, but no one had asked patients with kidney disease what was actually important to them,” says Schick-Makaroff. “And they came up with a list, which is incredibly valuable! So now we can align our research priorities so that we’re addressing their needs.”
The number one priority for people living with kidney disease is quality of life, which came as no surprise to Schick-Makaroff.
“We know from the research that as your kidney disease increases, your quality of life decreases, so there’s an inverse relationship between the two,” she points out. “But we also know that when people report better quality of life, they live longer. And similarly, if you report a higher quality of life, your health status is also higher.”
If a patient has a successful kidney transplant, they often experience a high quality of life. However for those on dialysis, quality of life can be a challenge.
“Dialysis is unbelievably hard on the body,” explains Schick-Makaroff. “If you’re on dialysis in the hospital, you’re going every second day for four hours at a time, and that machine is doing in four hours what your kidneys would usually do in a couple of days. It’s incredibly aggressive and at the end, you can just feel beat up.”
But how exactly can researchers and healthcare providers enhance quality of life, enrich person-centred care, and improve services for those affected by chronic kidney disease
“Clinicians need patients’ views about how chronic kidney disease impacts their overall life so that they can respond to any concerns,” says Schick-Makaroff.
“One way to do this is to use questionnaires inquiring about their health and quality of life, inviting people to share how their illnesses impact their lives. These patient-reported outcomes on symptoms and physical, psychological and social wellbeing, and experiences with healthcare provide vital and often missing information to the healthcare team.”
For decades, patient-reported outcomes have been used in research, but it’s only been more recently have they been increasingly used in routine clinical practice to learn about what is important to patients and the impacts of illness or treatments from patients’ point of view.
“We know that patients report better outcomes and experiences with care when health services address what matters most to patients, from their point of view,” explains Schick-Makaroff.
In Canada there’s no standardization for how patient-reported outcomes are collected or used in kidney care. Further, this collection can even vary within the same health authority. “This lack of consistency is a problem, but the bigger issue is that we also don’t know how we can or should use them,” she says.
Schick-Makaroff’s current research project, funded by a New Investigator Award from the Kidney Research Scientist Core Education and National Training (KRESCENT) and Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD), as well as Canadian Institutes of Health Research (CIHR), will study the impact of routine use of electronically provided patient-reported outcomes in home dialysis across Alberta.
Her goal is to understand how to best support clinicians and administrators in routinely utilizing electronic patient-reported outcomes and experiences to enhance person-centred care. Findings of this research may ultimately improve the quality of health services for Canadians living with chronic kidney disease, as well as their quality of life.
Nothing about us without us
Although patient engagement has always been at the forefront for Schick-Makaroff, it was a serendipitous encounter that led to a remarkable collaboration for this project.
Nurse—and kidney transplant recipient—Loretta Lee (Dip ‘88, BScN ‘97) reached out to Schick-Makaroff with the goal of offering financial support for her research on chronic kidney disease.
But Schick-Makaroff had something else in mind.
“Loretta offered a penny and I followed up by asking for a pound,” says a laughing Schick-Makaroff. “I was writing the KRESCENT and CIHR grants and it was a great fit, so I asked Loretta to join the research project and be involved in the writing and reviewing process.”
Although initially apprehensive about the request, Lee’s interest in how the research could affect the care of those with kidney disease won out—much to Schick-Makaroff’s delight.
“It’s been just amazing,” says Schick-Makaroff. “Loretta isn’t only a formal collaborator on this research, but also the chair of the patient advisory committee.”
As a chronic disease manager with an Edmonton Primary Care Network and kidney disease patient herself, Lee is all too aware of how crucial quality of life is for patients.
Dealing with the healthcare system and trying to maintain a “normal” life for patients with chronic diseases can be a challenge, explains Lee.
“Patients and their families should be able and encouraged to have a voice in their care and the research that being conducted about their illness,” says Lee. “This is their life and their stories and feedback are necessary to guide health care providers in care planning.”
Joining Schick-Makaroff’s research team has made Lee more aware of what’s necessary for research data to be reliable and valid so that it can ultimately guide the care patients like her receive.
“Being involved in this research gives me hope that health care providers will better understand my life—my experience—and I won’t be looked at like just another of the thousands of kidney disease patients,” says Lee.
And that’s exactly the goal for Schick-Makaroff.
“I often circle back to the phrase: Nothing about us without us,” she says. “It’s such an important concept that’s always in the back of my mind. How else will we know what is important to people living with illness if we don’t ask and engage them in our research?”
Some would argue fate led Schick-Makaroff to pursue patient engagement and patient-oriented research—others, sheer coincidence. Whatever it was, her goal appears to be moving towards realization. The needs and perspectives of those living with a life-limiting illness, like chronic kidney disease, are being attended to in greater measure by both their immediate health care providers and their healthcare system.