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Development and Content Validity of a Patient-Reported Experience Measure for Home Dialysis
Matthew B Rivara1,2, Todd Edwards3, Donald Patrick3
1Kidney Research Institute, University of Washington, Seattle, Washington.
Summary
A new patient-reported experience measure was developed for home dialysis patients. This tool assesses care for peritoneal dialysis and home hemodialysis, improving patient experience evaluation.
Area of Science:
- Nephrology
- Patient-Reported Outcome Measures
- Healthcare Quality
Background:
- Home dialysis modalities (peritoneal dialysis, home hemodialysis) are increasingly used for kidney failure.
- Existing patient-reported experience measures are lacking for home dialysis care.
- A validated instrument is needed to assess patient experiences in home dialysis settings.
Purpose of the Study:
- To develop and establish content validity of a patient-reported experience measure for home dialysis.
- To create a tool for assessing patient experiences in peritoneal dialysis and home hemodialysis.
Main Methods:
- Mixed-methods approach involving literature review, focus groups, and interviews with patients and providers.
- Concept elicitation from 65 participants (patients, nurses, partners, nephrologists).
- National prioritization exercise with 130 participants and cognitive debriefing for measure refinement.
Main Results:
- Identified 15 domains across six key areas of home dialysis care experience.
- Patient education, communication, care coordination, and personalization were prioritized.
- The final 26-item Home Dialysis Care Experience instrument demonstrated interpretability and content validity.
Conclusions:
- The Home Dialysis Care Experience instrument is the first rigorously developed, content-valid English-language measure for home dialysis.
- This instrument enables systematic assessment of patient experiences in peritoneal dialysis and home hemodialysis.
- Facilitates quality improvement initiatives by providing a standardized patient feedback tool.
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