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N/A N=543 Health Services Research

Electronic Patient-Reported Outcomes in Clinical Kidney Practice (ePRO Kidney)

Kidney Disease, End-Stage

Enrolled (actual)
543
Serious AEs
0.0%
Results posted
Mar 2021
Primary outcome: Primary: Symptoms - Trajectory of Change — 77.2; 76.2 score on a scale — p=0.30

Study Design & Population

Study type
Interventional
Phase
N/A
Interventions
Educational Support (Other)
Age
Adult, Older Adult · 18+ yrs
Sex
All
Sponsor
University of Alberta
Primary completion
Oct 2019

Outcome Measures

OutcomeResultp-value
PRIMARY
Symptoms - Trajectory of Change
77.2; 76.2 0.30
PRIMARY
Person-centred Care - Trajectory of Change
3.4; 3.5 0.28
SECONDARY
Utilization of Health Services
1.99; 2.33; 5.72; 4.53 0.22
SECONDARY
Number of Participants Who Selected "1 - Excellent" on Satisfaction With Care
654; 547 0.18
SECONDARY
Mental Health - Trajectory of Change
50.9; 51.0 0.79
SECONDARY
Quality of Life - Trajectory of Change
0.772; 0.745 <0.001 sig

Summary

People living with end-stage kidney disease (ESKD) need dialysis or transplantation in order to stay alive. This illness and treatment significantly impact peoples' health, emotions, work and relationships. To promote person-centred care, healthcare professionals should be asking patients about what matters to them and using this feedback to plan and deliver care. Patient-reported outcome and experience questionnaires (jointly referred to as PROs) allow patients to provide information about their quality of life, symptoms and experiences with care. PROs are increasingly used to help healthcare professionals learn about what is important to patients and the impacts of illness or treatments from patients' point of view. Embedding feedback from patients into routine clinical practice is important in end-stage kidney disease because of the physical and quality of life challenges these patients face when living with kidney failure. PROs provide vital and often missing information that the healthcare team can use to support patients. However, PROs administered via paper questionnaires have been perceived as cumbersome, difficult to integrate with other health information and do not provide immediate feedback. In this research, home dialysis patients will have the opportunity to complete electronically administered PROs (ePROs) and healthcare professionals will receive education about how to use PRO information. The goal is to learn how to support healthcare professionals to routinely use this information to inform patient care, and see if this makes a difference in patients' symptoms, person-centred care, quality of life and satisfaction with care. Learning what matters most to patients is essential for healthcare professionals to provide person-centred care. This research will address the gap in our understanding of how to best use patients' reports in healthcare. Findings of this research may ultimately improve the quality of healthcare for Canadians living with end-stage kidney disease.

Eligibility Criteria

Patient inclusion:

  • home dialysis patients attending regularly scheduled appointments in Edmonton at the Aberhart Clinic (NARP) or in Calgary at the Sheldon M. Chumir Health Centre (SARP)
  • ≥18 years old
  • able to read and speak English
  • can provide written informed consent
  • if a patient changes dialysis modality, they can continue to participate

Clinician inclusion:

  • all clinical staff working with home dialysis patients at the Aberhart clinic in Edmonton (NARP)
  • study co-investigators/collaborators who are NARP clinicians may choose to participate

Patient exclusion criteria:

  • visual impairment
  • cannot read or speak English
View full record on ClinicalTrials.gov →

Data sourced from ClinicalTrials.gov (NCT03149328). Outcome figures and adverse-event rates are extracted automatically from the registry's posted results and are provided for clinician reference, not as a substitute for the primary publication.

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