HealthyQOL.com

Quality of Life Assessments
in Kidney Health

quality-of-life-assessments-overview-questions

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

Click to download Adobe Acrobat Reader to view these resources.

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.

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)


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.

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This research is funded by Canadian Institutes of Health Research (CIHR), Kidney Research Scientist Care Education and National Training program (KRESCENT), Kidney Foundation of Canada (KFOC), Alberta Kidney Care North, Alberta Health Services & Alberta Kidney Section, Medicine SCN™, Alberta Health Services.

™ Trademark of Alberta Health Services & Alberta Kidney Section, Medicine SCN. Used with permission.