Research Awards Recipients

Lay Summary

Persons with kidney failure receiving hemodialysis commonly report clusters of symptoms (such as fatigue and itching) and poor quality of life. Patient-reported outcome measures, or PROMs, are questionnaires used to assess individuals’ perspectives on their symptoms, quality of life, and function without interpretation by clinicians or anyone else. Whereas PROMs have been used primarily as research tools, they are becoming more widely adopted in clinical settings to support person-centered care. As part of the patient-oriented research initiative, EMPATHY, patients will complete PROMs (i.e., symptom questionnaires) every 2 months for one year. Their responses will be fed back to their clinicians who will review results and address symptoms using patient and provider educational tools. Whereas the EMPATHY initiative will examine the impact of PROM use on communication and clinical outcomes quantitatively, a qualitative study is needed to more fully understand the experiences of patients, family/support persons, and clinicians with PROM use in routine hemodialysis care.

Dr. Elliott’s project will explore the experiences of hemodialysis patients, family/support persons, and clinicians with implementation of PROMs, perspectives on their use, and barriers and facilitators to their integration in routine care. She will also explore how patient partners on the research team observe PROM use in routine HD care through analysis of their field notes, with the intent of understanding how lived experience with kidney failure might influence the nature of their observations and interpretations.

She will conduct interviews and focus groups with hemodialysis patients, their family/support persons, and clinicians (e.g. nurses, allied health professionals, nephrologists) after 4-6 months of PROM use across 10 Southern Alberta hemodialysis centres. Findings from this qualitative study will enhance the overall EMPATHY initiative by helping identify aspects of PROM use that could be tailored to promote sustainable, person-centered hemodialysis care. This project also addresses priority areas identified in partnership with hemodialysis patients and stakeholders. Findings will have implications for the patient-oriented research community, including teams seeking to develop meaningful research partnerships with patients.