Welcome to the third 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.
In this issue, we highlight several projects and initiatives focused on pediatric nephrology and improving the health of children in Canada living with kidney disease.
New symptom assessment tool will improve care for kids with kidney disease
Kidney disease most often affects adults, but this does not mean that children are immune to developing the condition. What’s more, kidney disease in children can be very different than in adults, which highlights the need for more pediatric-specific studies and clinical tools. Fortunately, the Can-SOLVE CKD Pediatrics Committee has been working to address these disparities and develop new solutions for Canada’s youngest kidney patients.
One priority project is called PRO-Kid, which involves the development and evaluation of a symptom assessment scale for children living with kidney disease.
“All of the existing questionnaires have been developed for adults or children with other health conditions, for example cancer, so we don’t know whether these tools are appropriate for children living with kidney disease,” explains Allison Dart, co-chair of the Pediatrics Committee who has been co-leading the development of PRO-Kid along with Mina Matsuda-Abedini.
She emphasizes that a tool such as PRO-Kid is especially important since children living with kidney disease can experience very different symptoms than adults. For example, children generally have more energy than adults and are less likely to experience pruritus (itchy skin). As well children generally tend to be healthy other than having kidney disease, whereas adults tend to have other health conditions simultaneously, such as cardiovascular disease.
To account for these differences in symptoms, Dart’s team sought to develop PRO-Kid. For the first phase of the project, this involved many interviews with children living with kidney disease and their family members to explore what symptoms are most important to them, and, notably, how to ask the questions in a way that kids understand.The results were used to create the new symptom assessment tool.
Now, the team is completing phase two of the study, which will evaluate the effectiveness of the tool in the clinic. It’s currently being tested in Toronto and Winnipeg, with five more sites across Canada slated to begin testing in the coming months.
“We are really focused on the patient experience with this study,” says Dart, noting that along with consulting patients and their families extensively in the first phase of the project, the research team includes three patient partners who work closely to inform the study process. The team hopes to have even more patient partners on board for the next stage of the project, to help with knowledge translation and dissemination of PRO-Kid, meaning how to get the tool into the hands of physicians in the clinic.
“I’ve seen how adult nephrologists have used other tools in a meaningful way, and I was really missing having a tool that I could use with my patients, so I think the most exciting part of this study is that it will help improve patient care.”
Dr. Allison Dart
Along with the development and evaluation of PRO-Kid, the Pediatrics Committee is interested in exploring the use of administrative data across the countryto advance pediatric nephrology research, and as a first initiative Michael Zappitelli, co-chair of the Pediatrics Committee is leading the planning of a study focused on acute kidney injury in children.
As well, they are prioritizing building a network across Canada that can more easily launch pediatric studies. The relative rarity of kidney disease in children makes it difficult to study. “You really need a national network to recruit enough patients to be able to answer questions in a meaningful way,” emphasizes Dart. “This will allow us to accelerate pediatric research substantially, with the ultimate goal of improving care for children living with kidney disease.”
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Patients and families at the heart of new research to control diabetes in teens
Lynne McArthur and her husband were taken by surprise when one of their twin sons, Aidan, was diagnosed with type 1 diabetes at just 18 months old. Neither of the parents had a family history of diabetes. Nevertheless, Lynne’s reaction was to jump into action. She was pregnant with her third child at the time and immediately signed up fortwo studies run out of Hospital for Sick Children in Toronto– one to monitor her unborn child’s health, the other to monitor her son’s twin – both in the hopes of helping researchers uncover unknown causes of diabetes. The whole family has played an active role in research ever since.
Lynne and her husband Mike had a second shock when Aidan’s twin brother Fergus developed diabetes just after he turned 8. As her sons approached adolescence Lynne heard about a new study that piqued her interest. Diabetes is associated with the development of several other conditions, including kidney disease. The medical community knows that these secondary complications that are linked to diabetes most often start during the teenage years and can get more severe over time. The Adolescent Diabetes Cardio-Renal Intervention Trial (AdDIT) is a study that aims to see what factors contribute to kidney disease and other diabetes-associated complications during this critical point in a person’s life – and if there are ways to prevent kidney disease from progressing.
Both of Lynne’s twins enrolled in AdDIT during early adolescence and continue to participate in the study now, as young adults. Shortly after first enrolling, the family attended a kidney awareness event. “It was really eye-opening for a parent of two diabetics who were both at risk [of kidney disease], to see what the potential complications could be,” says Lynne, who heard many first-hand accounts from kidney patients at the event.
“It gave the family a renewed attitude of: let’s do what we can so that our kids never have to have a nephrology doctor. It was very powerful.”
As part of the study, Lynne’s sons were given two medications that may have the potential to slow progression of kidney disease. Results suggest that one of the drugs, called an ACE inhibitor, has a small beneficial effect at limiting progression of microalbuminuria, a condition where some excess nutrients leak from the kidneys. Microalbuminuria is an early sign of kidney disease.
But studying the effects of preventative drugs is just one component of AdDIT. With so many teenagers enrolled – more than 350 – the study is a prime opportunity to explore what factors may contribute to diabetes-associated complications during this important stage of life. Therefore, the researchers are also looking at a number of other factors throughout the course of the study. This includes taking urine and blood samples on a regular basis, which may reveal proteins and other indicators (called biomarkers) associated with kidney disease.
Dr. Farid Mahmud, a researcher at Sick Kids Hospital in Toronto who is helping lead the study, also notes that teenagers face a number of psychological stresses during this time in their life, as they become young adults.“We’ve found in the past that these [stressors] are significant contributors to some of the risks that these patients face in terms of progression of their diabetes complications,” he says. For these reasons, the study is also monitoring psychosocial factors in order to better understand how these may contribute to the long-term physical health of teenagers with diabetes.
For the McArthur family, the teenage members are not the only ones involved in AdDIT. Lynne has been playing a central role in the trial herself. As a patient partner, she provides the research team with valuable feedback on how to reach out to other parents of diabetic children and how to communicate technical aspects of the study to them, among other tasks to support the research project.
“Over the years, I developed a great appreciation for the work that Dr. Mahmud and his team do, and a have tremendous respect for what they’re trying to accomplish,” she says. “I feel privileged to be part of the team, accelerating important research to help our kids with Type 1 diabetes.”
Lynne says working as a patient partner on the research team has been a very positive experience.“Adding the patient voice does two things,” she explains. “It humanizes the research, which is very important. And it brings a great voice to the table that hasn’t been heard in the past.”
Although her two boys are in the process of transitioning out of their pediatric program for managing diabetes, the family will continue to contribute to and participate in the AdDIT study in the coming years, in the hopes of advancing therapies, preventative measures, and care for others living with diabetes.
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Can a new treatment for controlling blood sugar prevent kidney disease in teens?
Adolescence is an important time in everyone’s life, but this can be especially true for teens with Type 1 diabetes. Blood sugar levels can be particularly high during this stage of life – putting extra strain on the kidneys and potentially causing long-term damage to these organs. Anything that might help address these health complications in adolescence could mean better health outcomes in adulthood.
Currently, there are few treatment options to prevent kidney damage during adolescence other than managing blood sugar levels with insulin. But one research team is exploring another option through a novel study called ATTEMPT.
“We are studying an oral medication that individuals with diabetes take in addition to insulin,” explains Dr. Farid Mahmud, an endocrinologist and researcher at The Hospital for Sick Children in Toronto, and Principal Investigator of the study. “The idea is to prevent kidney damage, but also improve their blood sugar.”
The medication belongs to a class of drugs called SGLT2 inhibitors, which have been shown to slow down and even prevent the development of kidney disease in adults with Type 2 diabetes, as well as cardiac complications associated with the condition. But the question now is whether these medications are also beneficial for teenagers.
Lynne McArthur is a mother to two sons living with Type 1 diabetes. She and her sons previously worked with Dr. Mahmud on Can-SOLVE CKD’s AdDIT study, and McArthur has continued working on research projects with him ever since. The ATTEMPT trial, funded by a SPOR Innovative Clinical Trials grant, is the third study she has worked on with Dr. Mahmud as a patient partner, in the hopes of finding new solutions for treating diabetes-associated kidney disease.
“If there’s anything I can do to advance diabetes care and prevention of diabetes-associated complications, I will do it.”
For ATTEMPT, she has shared her experience as a parent to inform how the study can be done feasibly from the home. Notably, while teenagers are the study participants, parents play a substantial role in making sure that medications are taken on time and that urine samples are stored properly, among many other tasks.
McArthur emphasizes that incorporating patient perspectives, including the perspectives of parents, can have a positive impact on how clinical trials are conducted. “It will make the experience that much better for the patients and families who are participating in the trial,” she explains.
Now that McArthur, Dr. Mahmud and other members of the ATTEMPT research team have the study design outlined and approved, they are actively recruiting participants at sites in Ontario (The Hospital for Sick Children, Trillium Health Partners, Markham Stouffville Hospital and London Health Sciences Centre) and Colorado (Children’s Hospital). Participants with Type 1 diabetes between the age of 12 and 18 will be enrolled for 22 weeks in the study. If you are interested and want to hear more about the ATTEMPT study, please contact the study team at 416-813-7654 ext. 204517 or by email at firstname.lastname@example.org
The very first participant completed the study this past summer, with more participants following suit. “It was a nice milestone for us, but we’re looking to add new participants in and have continued engagement with people who can partake in it,” says Dr. Mahmud. “It’s an exciting and innovative study. We’re the only ones exploring this globally, and a lot of people are looking to see what we learn and how can we share it within the clinic.”
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Manuel Escoto keeps a positive outlook while using his experience to help others
Can-SOLVE CKD Knowledge User/Knowledge Translation Committee
“Dialysis isn’t just a treatment, it is life support. We have no choice but to endure this difficult journey until we get the opportunity to receive a transplant…this is our reality, as patients. It is never ending but we need to speak about this – and I include myself in this. I need to be honest and hope it impacts someone to consider signing their card or becoming a living organ donor.”
Shortly after birth, Manuel Escoto was diagnosed with posterior urethral valves, a medical condition that affects the bladder. For much of his childhood, health complications led to frequent visits to the doctor’s office and emergency room, before his health appeared to improve during his late teenage years. By age 19, he was feeling healthy and ready to start a new chapter of his life at Grant MacEwan University.
“Everything was going well at first, but towards the end of the semester I started feeling a bit off,” explains Manuel. He brushed it off thinking it was just stress related to finals.At first his vision was blurry, but then he began to experience extreme fatigue, headaches and nausea. “In the span of between two or three weeks, I ended up in emergency,” Manuel says. “Everything had snowballed.”
In the emergency room, a doctor informed Manuel that his kidneys had failed, and that he would need to start dialysis within 24 hours, given that his creatine was over 2,100 µmol/l.
Manuel was stunned. “I felt very overwhelmed,” he says. “I didn’t really get what the doctor was saying. Honestly, I had never given thought to my kidneys before. Dialysis – what’s dialysis? You’re telling me I’m going to need a transplant – what does that even mean? These are words that I had never learned before. It was completely foreign.”
Manuel went to a dialysis clinic three times a week for the next 21 months. For someone in their early 20s, this required a modified lifestyle. Saturday nights were when his fellow classmates were often attending events and socializing, but it was also his usual timeslot for dialysis. Even single-night camping trips had to be cancelled if the plans clashed with his dialysis schedule. Nevertheless, Manuel was able to schedule dialysis treatments in the evening and continue with his studies throughout the week.
He says that, while many people express sympathy for him experiencing kidney failure at such a young age, he feels lucky. Being younger, and especially with all the health issues he faced as a child, meant that he could cope better with the dialysis treatments compared to many elderly people whom he sat alongside at the clinic.
Manuel shares his perspective on transitions of care in CKD at the 2021 CANA/Can-SOLVE CKD/CSN Joint Symposium
He also feels gratitude for all the support from his family – every single member of his immediate family volunteered to donate a kidney for him, and he eventually received a transplant from his mother.
Over the course of 14 years since Manuel received his transplant, he has made every day count. “I was able to continue my undergraduate studies and I went back and finished my masters,” he says. “Traveling has become such a huge thing after my transplant because [any day] it could be gone and I could be back in that [dialysis] chair.”
His advice for other young people diagnosed with kidney disease is to realize that it’s okay to not push yourself so hard. “We shouldn’t minimize the impact that kidney disease and organ failure have on our physical and emotional health. If you need support, ask for it. If you need to talk to someone, many programs now exist were you can speak with someone who has gone through a similar journey.”
While he was on dialysis, Manuel wanted to be as “normal” as possible. Now as a 35-year-old, he realizes that no one expected him do anything other than be as healthy as he could. But the internal pressure he put on himself to be normal led to some situations where his exhausted himself. As well, he emphasizes how important it is for patients to ask questions
“My goal was to be that good patient, compliant patient, who didn’t create any fuss,” explains Manuel. “But, if you aren’t sure about something, ask questions. The more information you have, the better you’ll be able to navigate and be your own advocate.”
As an experienced dialysis patient and now transplant patient, Manuel is working with Can-SOLVE CKD as a patient partner and member of the Knowledge Translation/Knowledge User Committee, where he not only shares his experience as a patient but also his expertise in research, policy and knowledge translation. One thing that he says is particularly great about working with the network is that his insights and perspectives are taken seriously. “It’s not about tokenism, which I absolutely love,” he says. “Everyone has been so great to work with. When they take your opinion and value it as a patient, that’s what you want. You want to feel like you matter and your input matters. And you’re not there just so they can check off a box.”
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Research with Impact
We are creating new knowledge about kidney disease to answer patients’ most important questions. Since 2016, we have published more than 80 peer-reviewed articles, which have received more than 850 citations. Significantly, 40 per cent of these publications feature patient partners as co-authors, demonstrating a true culture change in kidney research.
We are pleased to share some of our recent publications focused on important issues affecting youth living with or at risk for chronic kidney disease.