Over the past few years, Can-SOLVE CKD Network researchers, including patient partners, have developed, tested and begun implementing the PRO-Kid symptom assessment tool. The tool is essentially a 14-item questionnaire that gathers patient-reported outcomes that children living with chronic kidney disease are experiencing. The project has been co-led by Dr. Allison Dart of Children's Hospital Research Institute of Manitoba and Dr. Mina Matsuda-Abedini of BC Children’s Hospital.
In 2024 and 2025, seven sites across Canada, including BC Children’s Hospital, validated the PRO-Kid questionnaire in preparation for broad implementation into clinical practice.
Dr. Matsuda-Abedini explains some of the benefits of the questionnaire: “Patient-reported outcome measures (PROMs) such as PRO-Kid are people-centred, providing information about a patient's health from their perspective, specifically a child living with chronic kidney disease or on dialysis. At the individual level, this helps the care team understand how a patient’s condition affects their daily life, and can help measure how their symptoms are improving (or not) with treatment, allowing the team to personalize care for the child.”
Kelly Loverock has been a member of Can-SOLVE CKD’s Patient Governance Circle since 2021 and is the parent of a child with chronic kidney disease in Ontario. As a patient partner who has provided input and feedback on the PRO-Kid tool, she says, “I think it is a fantastic way to empower children to express themselves and be more forthcoming about their experiences, especially in cases where blood work or a physical exam doesn't necessarily highlight an issue or anomaly (e.g., maybe they're really fatigued but blood work doesn't necessarily indicate a problem).”
Connecting with the PROMIS information system
British Columbia’s Patient Records and Outcome Management Information System, known as PROMIS, is a province-wide integrated registry and clinical information system for kidney disease and transplant patients, and is the only one of its kind in Canada.
Karin Jackson is the director of operations for PROMIS. In spring 2024, she was invited by Dr. Janis Dionne, medical director of the renal program at BC Children’s Hospital, to participate in a working group to determine how the PRO-Kid tool could be used in an optimal way in BC.
Karin notes, “Drs. Dionne and Matsuda-Abedini knew we were capturing symptom assessment information of adult patients in PROMIS (via the
ESAS-r: Renal tool) and wanted to do the same with PRO-Kid in PROMIS for the pediatric population, in part to enable data analytics that can inform best practices in care.”
Dr. Dionne adds, “With many electronic medical records in operation, we consider PROMIS as our ‘source of truth’ for the provincial pediatric renal patient data. It allows us to work together to capture data, monitor outcomes, and assess the quality of the care provided, contributing to renal program improvements and policy development.”
The initial ask was for an implementation in PROMIS similar to how ESAS is captured - with the development of a custom assessment tool screen with graphs and trending - and the PROMIS team realized this would take some time to prioritize and implement.
Karin explains though that the PROMIS system was already set up to quickly take on a first phase of implementation: “A number of years ago, on the heels of several requests for questionnaire-type data collection in PROMIS, we built capabilities that would allow us to implement this without starting from scratch.”
Benefitting from a phased approach
With additional features planned for the future, the first phase would allow PROMIS to begin collecting data as quickly as possible.
Dr. Matsuda-Abedini explains how she and her team were happy to take a phased approach: “We were open to being flexible and were able to respond quickly to requests for input as the PROMIS team configured PRO-Kid.”
As a result, the first phase of PRO-Kid with PROMIS was able to be a part of the next release of PROMIS updates in November 2024, just a few weeks after PRO-Kid was implemented within the BC Children’s Renal Program.
Looking to the future, additional phases are underway for further optimizing PRO-Kid with PROMIS.
Aligning with Equitable & Optimal, People-Centered Care
One of BC Renal’s foundational principles is Equitable & Optimal, People-Centered Care. The combination of PROMIS-enabled data analytics and the Can-SOLVE CKD PRO-Kid questionnaire is an example of this principle in action to better serve BC’s youngest kidney patients.
More about PRO-Kid:
To learn more about Can-SOLVE CKD’s PRO-Kid project, see:
