healthyqol.com

illustration-of-adult-family-house-qol-assessment

The whiteboard “Quality of Life in Kidney Care: What Matters to you?” and the list of “Resources for Coping With and Adjusting To Dialysis” are for people who are living with kidney disease.

These resources can help you live your best life possible.

Resources for Coping With and Adjusting To Dialysis:

Alberta (PDF - 12 pgs, 668 KB)
British Columbia (PDF - 21 pgs, 1 MB)
Manitoba (PDF - 17 pgs, 888 KB)
New Brunswick (PDF - 11 pgs, 625 KB)
Newfoundland & Labrador (PDF - 11 pgs, 624 KB)
Nova Scotia (PDF - 12 pgs, 672 KB)
Northwest Territories (PDF - 11 pgs, 632 KB)
Nunavut (PDF - 11 pgs, 622 KB)
Ontario (PDF - 12 pgs, 662 KB)
Prince Edward Island (PDF - 11 pgs, 624 KB)
Quebec (PDF - 16 pgs, 848 KB)
Saskatchewan (PDF - 12 pgs, 668 KB)
Yukon (PDF - 11 pgs, 625 KB)

If you have any feedback regarding the resource lists, please contact the Quality of Life Assessments in Kidney Health team.

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 this whiteboard and list of resources.

Quality of Life in Kidney Care Video (5 mins)

illustration-of-healthcare-providers-doctors-qol-assessment

The whiteboard “Quality of Life Assessment in Kidney Care” is for multidisciplinary kidney care providers.

It is designed to help kidney care providers incorporate QOL assessments into their practices and enhance person-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 (7 mins)

Our Team (PDF - 2 pgs, 154 KB)

Webinar: Engaging Patients

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

Pilot Work

Schick-Makaroff, K., & Molzahn, A. (2014). Patient satisfaction with the use of tablet computers: A pilot study in two outpatient home dialysis clinics. Canadian Journal of Kidney Health and Disease, 1(22). https://doi.org/10.1186/s40697-014-0022-9
Schick-Makaroff, K., & Molzahn, A. (2015). Strategies to use tablet computers for collection of electronic patient-reported outcomes. Health and Quality of Life Outcomes, 13(2). https://doi.org/10.1186/s12955-014-0205-1
Schick-Makaroff, K., & Molzahn, A. (2017). Evaluation of real-time use of electronic patient-reported outcome data by nurses with patients in home dialysis clinics. BMC Health Services Research, 17(439). PMID: PMC5485695 https://doi.org/10.1186/s12913-017-2377-y
Molnar, A. O., Barua, M., Konvalinka, A., & Schick-Makaroff, K. (2017). Patient engagement in kidney research: Opportunities and challenges ahead. Canadian Journal of Kidney Health and Disease, 4. https://doi.org/10.1177/2054358117740583 PMID: 29225906
Schick-Makaroff, K., Tate, K., & Molzahn, A. (2019). Use of electronic patient reported outcomes in clinical nephrology practice: A qualitative pilot study. Canadian Journal of Kidney Health and Disease, 6, 1-9. PMID: PMC6769209 https://doi.org/10.1177/2054358119879451

Synthesis of the Literature

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. PMID: 30636637
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., 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.

ePRO Kidney

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
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.

HealthyQOL.com Equitable People Centred Health Measurement

Quality of Life Assessments
in Kidney Health

Learning Resources for
QOL Assessment User Groups

People Living with Kidney Disease

Kidney Healthcare Providers

Resources for Coping With and Adjusting To Dialysis:

What to Do

What to Do

Schick-Makaroff, K., & Molzahn, A. (2014). Patient satisfaction with the use of tablet computers: A pilot study in two outpatient home dialysis clinics. Canadian Journal of Kidney Health and Disease, 1(22). https://doi.org/10.1186/s40697-014-0022-9

Schick-Makaroff, K., & Molzahn, A. (2015). Strategies to use tablet computers for collection of electronic patient-reported outcomes. Health and Quality of Life Outcomes, 13(2). https://doi.org/10.1186/s12955-014-0205-1

Schick-Makaroff, K., & Molzahn, A. (2017). Evaluation of real-time use of electronic patient-reported outcome data by nurses with patients in home dialysis clinics. BMC Health Services Research, 17(439). PMID: PMC5485695 https://doi.org/10.1186/s12913-017-2377-y

Molnar, A. O., Barua, M., Konvalinka, A., & Schick-Makaroff, K. (2017). Patient engagement in kidney research: Opportunities and challenges ahead. Canadian Journal of Kidney Health and Disease, 4. https://doi.org/10.1177/2054358117740583 PMID: 29225906

Schick-Makaroff, K., Tate, K., & Molzahn, A. (2019). Use of electronic patient reported outcomes in clinical nephrology practice: A qualitative pilot study. Canadian Journal of Kidney Health and Disease, 6, 1-9. PMID: PMC6769209 https://doi.org/10.1177/2054358119879451

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., 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.

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

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.

HealthyQOL.com Equitable People Centred Health Measurement

Quality of Life Assessments in Kidney Health

Learning Resources for QOL Assessment User Groups

People Living with Kidney Disease

Kidney Healthcare Providers

Resources for Coping With and Adjusting To Dialysis:

What to Do

What to Do

Schick-Makaroff, K., & Molzahn, A. (2014). Patient satisfaction with the use of tablet computers: A pilot study in two outpatient home dialysis clinics. Canadian Journal of Kidney Health and Disease, 1(22). https://doi.org/10.1186/s40697-014-0022-9

Schick-Makaroff, K., & Molzahn, A. (2015). Strategies to use tablet computers for collection of electronic patient-reported outcomes. Health and Quality of Life Outcomes, 13(2). https://doi.org/10.1186/s12955-014-0205-1

Schick-Makaroff, K., & Molzahn, A. (2017). Evaluation of real-time use of electronic patient-reported outcome data by nurses with patients in home dialysis clinics. BMC Health Services Research, 17(439). PMID: PMC5485695 https://doi.org/10.1186/s12913-017-2377-y

Molnar, A. O., Barua, M., Konvalinka, A., & Schick-Makaroff, K. (2017). Patient engagement in kidney research: Opportunities and challenges ahead. Canadian Journal of Kidney Health and Disease, 4. https://doi.org/10.1177/2054358117740583 PMID: 29225906

Schick-Makaroff, K., Tate, K., & Molzahn, A. (2019). Use of electronic patient reported outcomes in clinical nephrology practice: A qualitative pilot study. Canadian Journal of Kidney Health and Disease, 6, 1-9. PMID: PMC6769209 https://doi.org/10.1177/2054358119879451

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., 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.

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

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.

Quality of Life Assessments
in Kidney Health

Learning Resources for
QOL Assessment User Groups