Children with chronic kidney disease (CKD) often cope with different and complex symptoms, all while going to school, spending time with friends, and trying to participate in typical kid activities.

Yet they may struggle to explain these symptoms and the impact on their quality of life to their doctors and other care providers, meaning they may not be getting the care they need.  

To ensure young patients’ symptoms are being adequately monitored and addressed, a team of researchers within the Can-SOLVE CKD Network, co-led by Drs. Allison Dart (University of Manitoba) and Mina Matsuda-Abedini (UBC), developed a new symptom assessment tool for children and adolescents.  

Known as PRO-Kid (Patient-Reported Outcome Measure for Children with Chronic Kidney Disease), the tool has been validated in 100 children between the ages of eight and 18 from B.C. to Ontario.  

Now being evaluated at pediatric sites across Canada, PRO-Kid is poised to transform care for young people with CKD by centring what matters most to patients of all ages: feeling heard, understood, and supported.  

Listening beyond lab results  

Whereas doctors can easily ask adults about their symptoms, it can be a challenge for kids and teens to accurately describe what they are feeling. Co-designed by the PRO-Kid project team, which includes children with CKD and their families, PRO-Kid is a short questionnaire—available in digital or paper format—that gives young patients a voice in their care by allowing them to report symptoms in an age-appropriate manner.  

As the questionnaire was being developed, the PRO-Kid team saw that it was important to address not only the physical symptoms of kidney disease for this age group, but also the social and emotional ones. This is why PRO-Kid asks patients to rate the frequency and impact of 14 of the most burdensome CKD symptoms experienced by young patients, including fatigue, pain, loss of appetite, anxiety, and a child’s ability to participate in life, using emojis or simple language.  

Ke Fan is a 29-year-old from Ontario who has lived with CKD for most of her life. She is all too familiar with how it can impact childhood and emphasizes that blood tests alone cannot indicate whether a child is healthy. “It’s exciting to see PRO-Kid being implemented in the clinic,” she says. “We are moving towards that direction of [assessing] mental health, as well as holistic [treatment] of the entire person.” 

Opening new doors for care conversations  

PRO-Kid is currently in its implementation phase, with the questionnaire being assessed for use at several pediatric nephrology sites in Canada, including the Health Sciences Centre in Winnipeg and BC Children’s Hospital in Vancouver. Through surveys and focus groups with health care providers and IT specialists at these sites, the PRO-Kid team is gathering valuable information about potential barriers that could prevent pediatric nephrology care teams from using PRO-Kid and supports that can be put in place to make it easy and sustainable to implement the tool into standard practice.  

Dr. Dart, who is a clinician researcher at the Children’s Hospital Research Institute of Manitoba, says these focus groups have shown that health care providers almost “universally” see value in the tool—especially when it comes to assessing symptoms that are not usually systematically addressed with young CKD patients, such as depression and the ability to participate in life.  

“A highlight for me has been hearing that PRO-Kid is opening up doors for communication that weren’t previously open,” Dart says.  

Dr. Allison Dart, clinician researcher at the Children’s Hospital Research Institute of Manitoba.

What’s next for PRO-Kid  

Although health care providers have reported that they find the tool useful, PRO-Kid has encountered some logistical barriers to wider implementation in clinics. For example, the pediatric nephrology sites participating in the pilot each use different electronic medical record systems, known as EMRs, which means that the research team had to adapt the tool slightly to each system. Dart also notes that it’s important to have champions at each clinical site, who can help advocate for the use of PRO-Kid and ensure that it is integrated into practice.  

These insights and others gained through focus groups and readiness surveys at the pilot sites will inform the implementation of PRO-Kid at other sites across Canada in the future.  

The team has also adapted and validated versions of the PRO-Kid tool for younger children (ages two to seven) and French-speakers, both of which will be launched more widely soon.  

The PRO-Kid team doesn’t plan to stop there. Dart says, “We are always thinking of new things to do next, and we’re already thinking of developing some symptom management pathways to address some of the challenges patients face that are identified by the tool.” 

This means that after a care provider uses the PRO-Kid questionnaire to identify and assess symptoms in a young CKD patient, they might also be able to follow guidelines developed by the PRO-Kid team to provide the most appropriate treatment. In this way, children with CKD will not only be able to voice their symptoms and concerns but also receive optimal care based on what they self-report. 

To learn more about PRO-Kid and see a visual abstract for the study, visit the PRO-Kid project page.