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Patient reported outcome tools for better assessment and patient centered kidney care

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Patient-centred care integrates patients’ perspectives into assessment and treatment planning. Patient-Reported Outcome Measures (PROMs) are essential to patient-centred care since they collect information directly from patients about their perspective on their health and treatment. Tools such as the Patient Reported Outcomes Measurement Information System (PROMIS) have been developed and validated in different patient populations to assess for relevant domains in patients with chronic illnesses. Validated clinical assessment tools such as PROMIS will promote patient centered care and satisfaction as patient’s voices become incorporated in their health management.

Given the importance of patient reported outcomes in routine clinical care, we are pleased to receive support from the Kidney Foundation of Canada-Ontario branch on our project on “Patient reported outcome tools for better assessment and patient centered kidney care”.

In this project we will be validating PROMIS Computed Adaptive Testing (CAT) items in patients with end-stage kidney disease. PROMIS CAT item banks have personalized questions that reduce survey burden, while covering troublesome symptoms and concerns for patients with end-stage kidney disease. Moreover, this project will also define cut-off scores from the PROMIS CAT items that will help clinicians identify patients with specific care needs to guide targeted interventions. As a second phase of our project, we will run a pilot trial to assess the feasibility of using the PROMIS CAT toolkit for regular distress and symptom monitoring. This project will inform us about how practical the toolkit will be for physicians and other frontline healthcare providers to screen and monitor physical and psychosocial symptoms among patients with ESKD in everyday clinical care.

This project will ultimately bring together the collaborative research and training platform of the Ontario Patient Reported Outcomes of Symptoms and Toxicities group (ON-PROST: co-led by Dr. Doris Howell and Dr. Geoffrey Liu) and the UHN-Kidney Health Education and Research Group (UHN-KHERG: co-led by Dr. Istvan Mucsi and Dr. Marta Novak) to create a comprehensive PROMs research centre that focuses on chronic conditions, such as diabetes, heart, and lung disease.

We are grateful for the support from the Kidney Foundation of Canada-Ontario branch to continue our long-term goal of improving the quality of life and satisfaction with care of patients with end-stage kidney disease.

Written by Sumaya Dano. Edited by Noor El-Dassouki.

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