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Quality of Life Assessments
in Kidney Health

Three overlapping circles with questions: How are you doing, How is your care and What matters to you?

The resources on this page focus on supporting QOL assessment for people living with kidney disease, and kidney healthcare providers.



Learning Resources for
QOL Assessment User Groups

Download Adobe Acrobat Reader (opens in new tab) to view these resources.

abstract line-art icon of two adults next to home representing people living with kidney disease

Quality of life in kidney care: What matters to you?

The below videos, resource lists, and patient-facing pathway are for people who are living with kidney disease.

These resources can help you live your best life possible.

What to Do

  • ANSWER the quality of life questions before you have an appointment with your kidney care provider.
  • ASK your kidney care provider if you can talk about the answers you provided.
  • LEARN more by viewing resources below.

Quality of life in kidney care: What matters to you? (opens in new tab) (7 min video)




Coping with and adjusting to dialysis: How are you feeling?

Below are the provincial lists of free resources for coping with and adjusting to dialysis

▶ Provincial Lists of Free Resources
Province Download PDF File
Alberta 12 pgs (863 KB)
British Columbia 21 pgs (1.1 MB)
Manitoba 17 pgs (1.1 MB)
New Brunswick 11 pgs (817 KB)
Newfoundland & Labrador 11 pgs (816 KB)
Nova Scotia 12 pgs (755 KB)
Northwest Territories 11 pgs (819 KB)
Nunavut 11 pgs (814 KB)
Ontario 12 pgs (732 KB)
Prince Edward Island 11 pgs (816 KB)
Quebec 16 pgs (944 KB)
Saskatchewan 13 pgs (796 KB)
Yukon 11 pgs (817 KB)

Your journey: Coping with and adjusting to dialysis.

Living with dialysis is not easy and many people need extra support. Emotional wellbeing (how you think, feel, and act) is an important part of living well with dialysis.

Working with people receiving dialysis, we developed a patient-facing version of a pathway that will help Albertans receiving dialysis to know what to expect as they work with their healthcare providers, and cope with and adjust to dialysis.

You can access the pathway here: https://myhealth.alberta.ca/HealthTopics/coping-and-adjusting-to-dialysis-pathway (opens in new tab)

This article features an interview with Jeff Costly (Community Advisor), Alexandra Albers (NP student), and Kara Schick-Makaroff. Together, they share about our patient-led research that aims to help others cope with dialysis.

The interview can be accessed here:  Folio article (opens in new tab)


Beyond the machine: Q & A on dialysis and mental health

In this video, Jeff and May, two people with lived experience of dialysis, share their thoughts on mental health care in kidney care.

Beyond the machine: Q & A on dialysis and mental health (opens in new tab) (6 min video)




Healthcare providers icon

Quality of life assessments

The below videos and resources are for multidisciplinary kidney care providers.

They are designed to help kidney care providers incorporate QOL assessments into their practices and enhance people-centred healthcare decisions.

What to Do

  • REVIEW QOL assessment responses.
  • TALK with the individual about their responses, and really listen.
  • FOLLOW UP as appropriate.

Quality of Life Assessment in Kidney Care Video (opens in new tab) (7 min video)




Mental health care for people receiving dialysis care in Alberta

Why Mental Health Matters

Mental health is often under-addressed in dialysis care. This video explains why mental health care matters.

Why Mental Health Matters (opens in new tab) (2 min video)



The Mental Health Care Pathway for People Receiving Dialysis in Alberta

In this video, we share how the Pathway for Mental Health Care for People in Alberta, and its Practice Direction Document (PDD) were developed, along with a brief overview of the PDD.

Mental Health Care Pathway (opens in new tab) (4 min video)


In Alberta Kidney Care:

  • The mental health care pathway is similar to a policy document that may be used by all kidney care providers.
  • The mental health care PDD is similar to a procedure document most often used by dialysis nurses.
  • The pathway and PDD are being introduced in 2 dialysis sites.

You can access the following resources:

 Mental Health Care “Pathway” (opens in new tab) for People Receiving Dialysis in Alberta (PDF - 17 pgs, 956 KB).

 Mental Health Care “Professional Direction Document (PDD)” (opens in new tab) for People Receiving Dialysis in Alberta (PDF - 3 pgs, 500 KB).

 “Pharmacological Treatment Options” (opens in new tab) to support the Mental Health Care for People Receiving Dialysis (PDF - 3 pgs, 241 KB).

“Non-pharmacological treatment options” are outlined within the “Pathway” and “PDD” documents above.



Mental Health Assessment Tools: An Overview

This video provides a brief overview of the different mental health assessment tools that will be used by healthcare providers in the Pathway / PDD for Mental Health Care for People Receiving Dialysis in Alberta.

Mental Health Assessment Tools: An Overview (opens in new tab) (4 min video)



 Team Overview (opens in new tab) (PDF - 5 pgs, 250 KB)

Webinars

  •  Schick-Makaroff, K., Lo, L. S. H., Albers, A., Lee, L., LeRoux, J., Kemp, K., Bolin, M., Costley, J., & Zaman, S. (2025). Community advisory committee engagement in “Re. CBT Dialysis. (A realist evaluation: Why, for whom, in what circumstances does CBT work for people with depressive symptoms receiving dialysis?) Invited presentation at Alberta Health Services, Recovery Alberta, Mental Health and Addiction Services, Knowledge Bites Lunch & Learn, May 29 2025. Available online: https://www.albertahealthservices.ca/info/Page16241.aspx (opens in new tab)
  •  Schick-Makaroff, K., & Sparkes, D. (2018). Perspectives on engaging patients through the research process. Invited national webinar presentation for Can-SOLVE CKD (Canadians Seeking Solutions & Innovations to Overcome Chronic Kidney Disease) and KFOC (Kidney Foundation of Canada), September 24, 2018. Available online: https://www.youtube.com/watch?v=73VDOIOIURU&feature=youtu.be (opens in new tab)

Pilot Work

Synthesis of the Literature

  •  Schick-Makaroff, K., Levay, A., Thompson, S., Flynn, R., Sawatzky, R., Thummapol, O., Klarenbach, S., Karimi-Dehkordi, M., & Greenhalgh, J. (2021 - accepted). Use of patient-reported outcomes in the care of people with chronic kidney disease (PRO Kidney): A realist synthesis. The Patient.
  •  Flynn, R., Schick-Makaroff, K., Levay A., Greenhalgh, J. (2020). Developing an initial program theory to explain how patient-reported outcomes are used in healthcare settings: methodological process and lessons learned. International Journal of Qualitative Methods, 19, 1-11.
  •  Schick-Makaroff, K., Thummapol, O., Thompson, S., Flynn, R., Karimi-Dehkordi, M., Klarenbach, S., Sawatzky, R., & Greenhalgh, J. (2019). Strategies for incorporating patient-reported outcomes in the care of people with chronic kidney disease (PRO kidney): Protocol for a realist synthesis. BMC Systematic Review, 8(20), 1-10. https://doi.org/10.1186/s13643-018-0911-6 (opens in new tab). PMID: 30636637

Use of PROs in Kidney Care

ePRO Kidney

  •  Schick-Makaroff, K., Klarenbach, S., Kwon, J-Y., Cohen, R. S., Czupryn, J., Lee, L., Pauly, R., MacRae, J., Forde, B., & Sawatzky, R. (2023). Electronic patient-reported outcomes in clinical kidney practice (ePRO Kidney): A process evaluation. Therapeutic Advances in Chronic Disease, 14, 1-24. https://doi.org/10.1177/20406223231173624 (opens in new tab)
  •  Schick-Makaroff, K. (2021). Electronic patient-reported outcomes in clinical kidney practice (ePRO Kidney). ClinicalTrials.gov. Registration NCT03149328. Available at https://clinicaltrials.gov/ct2/show/NCT03149328 (opens in new tab)
  •  Schick-Makaroff, K. & Mharapara, P. (2020). Use of electronic patient reported outcomes in the care of patients with kidney failure. Nephrology Nursing Journal, 47(5), 465-472.

Mental Health in Dialysis

  •  Lo, L. S. H., Mharapara, P., Birchall, A., Berendonk, C., & Schick-Makaroff, K. (2025). Protocol for a scoping review on how chronic illness groups closely aligned with kidney failure address mental health. INPLASY: International Platform of Registered Systematic Review and Meta-analysis Protocols. Registration 2025120037. https://doi.org/10.37766/inplasy2025.12.0037 (opens in new tab)
  •  Fernandez, L., Thompson, S., Berendonk, C., & Schick-Makaroff, K. (2022). Mental health care for adults treated with dialysis in Canada: A scoping review. Canadian Journal of Kidney Health and Disease, 9(1), 1-16. https://doi.org/10.1177/20543581221086328 (opens in new tab)
  •  Schick-Makaroff, K., Berendonk, C., Overwater, J., Streith, L., Lee, L., Escoto, M., Cukor, D., Klarenbach, S., & Sawatzky, R. (2022). How are Albertans “adjusting to and coping with” dialysis? A cross-sectional survey. Canadian Journal of Kidney Health and Disease, 9, 1-14. https://journals.sagepub.com/doi/10.1177/20543581221118436 (opens in new tab)

Tailoring a Pathway for Mental Health Care for Albertans on Dialysis

Re: CBT Dialysis

  •  Micklitz, K., Greenhalgh, J., Lo, L. S. H., Sawatzky, R., & Schick-Makaroff, K. (2025). How are people undergoing dialysis expected to benefit from cognitive behavioural therapy? A realist analysis. Health Expectations, 28(5): e70466. https://doi.org/10.1111/hex.70466 (opens in new tab)
  •  Schick-Makaroff, K., Sawatzky, R., Greenhalgh, J., Cukor, D., Wong, H., Klarenbach, S., Berendonk, C., Micklitz, K., Lo, L. S. H., & Kennedy, M. (2025). Protocol for “Re: CBT Dialysis” - A realist evaluation: Why, for whom, and in what circumstances does cognitive behavior therapy work for people with depressive symptoms receiving dialysis? BMJ Open, 15, e090228. doi:10.1136/bmjopen-2024-090228 (opens in new tab)
  •  Schick-Makaroff, K., Sawatzky, R., Greenhalgh, J., Cukor, D., Wong, H., Klarenbach, S., Berendonk, C., Micklitz, K., Lo, L. S. H., & Kennedy, M. (2023, Nov 8). “RE: CBT Dialysis” - A realist evaluation: Why, for whom, in what circumstances does cognitive behavior therapy (CBT) work for people with depressive symptoms receiving dialysis? PROSPERO: International Prospective Register of Systematic Reviews. Registration CRD42023476184. Available at https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42023476184 (opens in new tab)
  •  Lo, L. S. H., Sawatzky, R., Greenhalgh, J., & Schick-Makaroff, K. (2025). A realist investigation of mental healthcare for people receiving dialysis and experiencing anxiety. PROSPERO: International Prospective Register of Systematic Reviews. Registration CRD420251130795. Available from https://www.crd.york.ac.uk/PROSPERO/view/CRD420251130795 (opens in new tab)

Mind the Gap