Project Overview

The prevalence of chronic kidney disease (CKD) is increasing in Canada with prevalence rates reaching up to 12.5% (3 million Canadian adults), and 3.1% (0.73 million adults) for stages 3-5. Advanced CKD requiring dialysis is expensive and is associated with poor health outcomes and quality of life. To report symptom burden and quality of life adjusted-survival alongside clinical and laboratory measures, it is imperative to measure and report what is important to patients.

Patient-reported outcome measures (PROMs) could be used to capture patients’ experiences of symptoms and impact of disease on functioning, and can support clinicians to monitor disease progression and facilitate patient-centered care. While evidence suggests that the use of PROMs in clinical practice have a positive impact, the impact on health outcomes and experiences is not fully understood, and their cost-effectiveness in clinical settings is unknown. This research aims fill these gaps by evaluating the impact of routinely measuring and reporting to care providers of PROMs on patient-reported experience and outcomes, clinical outcomes, and healthcare utilization.

EMPATHY: Patient-reported outcomes clustered RCT

Project lead(s):

Dr. Jeffrey Johnson, Dr. Michael Walsh

Research theme(s):

Quality of Life, Symptom Management

Project video

Visual Abstract

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Resources

The EMPATHY team trial has developed resources for clinicians and nurses in managing symptoms:

Patient Handouts on CKD Symptoms:

Symptom Guidelines for Clinicians:

Publications

  • Tissue Sodium Storage in Patients With Heart Failure: A New Therapeutic Target?

    Circulation: Cardiovascular Imaging

    Lemoine S, Salerno FR, Akbari A, McKelvie RS, McIntyre CW

  • Burden of mental health symptoms and perceptions of their management in in-centre hemodialysis care: a mixed methods study

    Journal of Patient-Reported Outcomes

    Schick-Makaroff K, Wozniak LA, Short H, Davison SN, Klarenbach S, Buzinski R, Walsh M, Johnson JA

  • Mapping the Edmonton Symptom Assessment System-Revised: Renal to the EQ-5D-5L in patients with chronic kidney disease

    Quality of Life Research

    Wen J, Jin X, Al Sayah F, Short H, Ohinmaa A, Davison SN, Walsh M, Johnson JA

  • Patient, Caregiver, and Provider Perspectives on Improving Information Delivery in Hemodialysis: A Qualitative Study

    Canadian Journal of Kidney Health and Disease

    Ferreira da Silva P, Talson MD, Finlay J, Rossum K, Soroka KV, McCormick M, Desjarlais A, Vorster H, Fontaine G, Sass R, James M, Sood MM, Tong A, Pannu N, Tennankore K, Thompson S, Tonelli M, Bohm C

  • Voicing Individual Concerns for Engagement in Hemodialysis (VOICE-HD): A Mixed Method, Randomized Pilot Trial of Digital Health in Dialysis Care Delivery.

    Canadian Journal of Kidney Health and Disease

    Thompson S, Schick-Makaroff K, Bello A, Tonelli M, Wiebe N, Buzinski R, Courtney M, Szigety S, Shah N, Bohm C

    Research Project: Triple I

  • Program Report: Can-SOLVE CKD Network Presents an Inclusive Method for Developing Patient-Oriented Research Tools

    Canadian Journal of Kidney Health and Disease

    Getchell LE, Fowler E, Reich M, Allu S, Boucher C, Burns K, Desjarlais A, L'Esperance A, Elliott M, Robinson-Settee H, Chiu HH, Rosenblum ND, Settee C, Murdoch A, Dew S, Green A, Franson L, Bernstein E, Sparkes D, Turner C, Fernandez N, Sapir-Pichhadze R

  • Functional Sodium MRI Helps to Measure Corticomedullary Sodium Content in Normal and Diseased Human Kidneys

    Radiology

    Akbari A, Lemoine S, Salerno F, Marcus TL, Duffy T, Scholl TJ, Filler G, House AA, McIntyre CW

    Research Project: NaMRI

  • Management of severe polyuria in idiopathic Fanconi syndrome

    Pediatric Nephrology

    Filler G, Geda R, Salerno F, Zhang YC, de Ferris MED, McIntyre CW

    Research Project: NaMRI

  • Animal, Human, and 23Na MRI Imaging Evidence for the Negative Impact of High Dietary Salt in Children

    Current Pediatric Reports

    Filler G, Salerno F, McIntyre CW, de Ferris MED

  • Partnering with Patients to Enhance Access to Kidney Transplantation and Living Kidney Donation

    Healthcare Quarterly

    Naylor KL, McKenzie SQ, Garg AX, Yohanna S, Sontrop JM

    Research Project: Living Donor

  • Protocol for a Process Evaluation of the Quality Improvement Intervention to Enhance Access to Kidney Transplantation and Living Kidney Donation (EnAKT LKD) Cluster-Randomized Clinical Trial

    Canadian Journal of Kidney Health and Disease

    Yohanna S, Wilson M, Naylor KL, Garg AX, Sontrop JM, Belenko D, Elliott L, McKenzie S, Macanovic S, Mucsi I, Patzer R, Voronin I, Lui I, Blake PG, Waterman AD, Treleaven D, Presseau J

    Research Project: Living Donor

  • A Quality Improvement Intervention to Enhance Access to Kidney Transplantation and Living Kidney Donation (EnAKT LKD) in Patients With Chronic Kidney Disease: Clinical Research Protocol of a Cluster-Randomized Clinical Trial

    Canadian Journal of Kidney Health and Disease

    Yohanna S, Naylor KL, Mucsi I, McKenzie S, Belenko D, Blake PG, Coghlan C, Dixon SN, Elliott L, Getchell L, Ki V, Nesrallah G, Patzer RE, Presseau J, Reich M, Sontrop JM, Treleaven D, Waterman AD, Zaltzman J, Garg AX

    Research Project: Living Donor

  • An eHealth self-management intervention for adults with chronic kidney disease, My Kidneys My Health: a mixed-methods study

    CMAJ Open

    Donald M, Beanlands H, Straus S, Smekal M, Gil S, Elliott MJ, Harwood L, Waldvogel B, Delgado M, Sparkes D, Tong A, Grill A, Novak M, James MT, Brimble KS, Tu K, Hemmelgarn BR

  • Risk of CKD Progression and Quality of Care Indicators in the Primary Care Setting

    American Journal of Kidney Diseases

    Yuen J, Harasemiw O, Singer A, Bello A, Ronksley PE, Bohm C, Drummond N, Tangri N

    Research Project: KFRE

     

  • Addressing Inequities in Kidney Care for Indigenous People in Canada

    Journal of the American Society of Nephrology

    Harasemiw O, Komenda P, Tangri N

  • Impact of COVID-19 Pandemic on Adolescents and Young Adults Living With Type 2 Diabetes

    Canadian Journal of Diabetes

    Marylin Carino, Zoe Quill, Melissa Gabbs, Elizabeth Sellers, Jill Hamilton, Teresa Pinto, Mary Jetha, Josephine, Onalee Garcia Alecio, Allison Dart, Brandy Wicklow

    Research Project: iCARE

  • Relationship between serum inflammatory markers and vascular function in a cohort of adolescents with type 1 diabetes

    Cytokine

    Sochett E, Noone D, Grattan M, Slorach C, Moineddin R, Elia Y, Mahmud FH, Dunger DB, Dalton N, Cherney D, Scholey J, Reich H, Deanfield J.

    Research Project: AdDIT

    Keywords: Diabetes

  • Hyperfiltration, urinary albumin excretion, and ambulatory blood pressure in adolescents with Type 1 diabetes mellitus

    American Journal of Physiology – Renal Physiology

    Lovshin JA, Škrtić M, Bjornstad P, Moineddin R, Daneman D, Dunger D, Reich HN, Mahmud F, Scholey J, Cherney DZI, Sochett E

    Research Project: AdDIT

  • Content and quality of websites for patients with chronic kidney disease: An environmental scan

    Canadian Journal of Kidney Health and Disease

    Smekal M, Gil S, Donald M, Beanlands H, Straus S, Herrington G, Sparkes D, Harwood L, Tong A, Grill A, Tu K, Waldvogel B, Large C, Large C, Novak M, James M, Elliott M, Delgado M, Brimble S, Samuel S, Hemmelgarn BR.

  • Development and Validation of Nine Deprescribing Algorithms for Patients on Hemodialysis to Decrease Polypharmacy

    Canadian Journal of Kidney Health and Disease

    Lefebvre MJ, Ng PCK, Desjarlais A, McCann D, Waldvogel B, Tonelli M, Garg AX, Wilson JA, Beaulieu M, Marin J, Orsulak C, Lloyd A, McIntyre C, Feldberg J, Bohm C, Battistella M

    Research Project: STOP Med-HD

  • Patient Perspectives on Integrating Risk Prediction Into Kidney Care: Opinion Piece

    Canadian Journal of Kidney Health and Disease

    Sparkes D, Lee L, Rutter B, Harasemiw O, Thorsteinsdottir B, Tangri

    Research Project: KFRE

  • Patient-reported outcome measures in the care of in-centre hemodialysis patients

    Journal of Patient-Reported Outcomes

    Davison S, Klarenbach S, Manns B, Schnick-Makaroff K, Buzinski R, Corradetti B, Short H, Johnson J

  • Development and Preliminary Psychometric Testing of an Adult Chronic Kidney Disease Self-Management (CKD-SM) Questionnaire

    Canadian Journal of Kidney Health and Disease

    Smekal MD, Donald M, Beanlands H, Straus S, Herrington G, Waldvogel B, Sparkes D, Delgado M, Bello A, Hemmelgarn BR

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