A new tool to support patients on dialysis

A newly published evidence-based practice protocol, led by Jasleen Gill, a recent master’s graduate, focuses on using patient-reported symptom tracking to improve dialysis care. The study was conducted at two dialysis centres in the Greater Toronto Area: University Health Network’s (UHN) Toronto General Hospital and the Etobicoke Renal Centre, which is part of William Osler Health System’s Etobicoke General Hospital.

Under the guidance of primary investigator Dr. Istvan Mucsi from UHN, Jasleen led the recruitment process at Etobicoke General. With support from Dr. Rosa Myrna Marticorena, Manager, Clinical Research, Osler Research Institute for Health Innovation, and a co-author of the publication, dialysis patients at Osler, a unique and diverse demographic, were given the opportunity to participate in this pioneering research.

The protocol outlines a pilot study that explores the feasibility of using an electronic patient-reported outcome measure (ePROM)-based screening tool to assess symptoms in dialysis patients. ePROMs, which collect data directly from patients, have shown promise in oncology for promoting people-centred care and improving the recognition of symptoms that may be overlooked by health care teams.

Dialysis patients with kidney failure often experience physical and psychological symptoms that can go unnoticed or unmanaged, negatively impacting their quality of life and clinical outcomes. Given that dialysis patients frequently experience persistent psychosocial symptoms, ePROM-based assessments may help in managing these symptoms more effectively. The study involves 60 patients, divided into intervention and control groups. Over six months, the intervention group will complete monthly ePROM check-ins, with real-time symptom scores shared with both the patients and their clinical teams. If moderate-to-severe symptoms are detected, referrals to supportive care services such as palliative care, psychiatry or social work will be made. The control group will also complete ePROMs, but their results will not be used in their care.

The ePROMs generate symptom scores immediately. Scores indicating moderate or severe symptoms are flagged and summarized for both patients and health care teams. Participants also receive a link to symptomcare.org, an evidence-based guide for self-managing symptoms, which also provides diagnostic support for the health care team. The results of this pilot study are expected to be released later this year.

A patient and caregiver advisory panel contributed to the study design and provided valuable feedback on self-management resources to support patients. The surveys assess physical, mental and social health, adapting to each patient's responses to provide tailored, individual results. Reports will include links to resources such as the Kidney Beam platform, which helps kidney patients manage both their physical and mental health. At the conclusion of the study, both participants and staff will complete satisfaction surveys to evaluate the approach.

If the pilot proves effective, the findings will inform the design of a larger, nationwide randomized controlled trial aimed at improving the quality of life for individuals undergoing hemodialysis.