HDCN Abstract:  ASN Annual Meeting 2020 -- Digital Meeting  

Rivara MB, Edwards TC, Patrick D, et al.

Development and Content Validity of a Patient-Reported Experience Measure for Home Dialysis

ASN Annual Meeting 2020 -- Digital Meeting
J Am Soc Nephrol (Oct) 31:51A 2020


The population of patients with kidney failure in the United States utilizing home dialysis modalities is growing rapidly. Unlike for in-center hemodialysis, there is no patient-reported experience measure for assessment of patient experience of care for peritoneal dialysis or home hemodialysis. We sought to develop and establish content validity of a patient-reported experience measure for patients undergoing home dialysis using a mixed-methods multiple stakeholder approach.


We conducted a systematic literature review, followed by concept elicitation focus groups and interviews among 65 participants, including 21 home dialysis patients, 33 home dialysis nurses, 3 patient care partners, and 8 nephrologists. We generated a list of candidate items for possible measure inclusion, and conducted a national aspects of care prioritization exercise among 91 home dialysis patients and 39 providers using a web-based platform. We drafted the Home Dialysis Care Experience (Home-DCE) instrument and conducted 3 rounds of cognitive debriefing interviews to evaluate item comprehensibility, order, and structure. We iteratively refined the measure based on interview findings.


The literature review and concept elicitation phases supported 15 domains of home dialysis care experience in 6 general areas: communication and education of patients; concern and helpfulness of the care team; proficiency of the care team; patient-centered care; care coordination; and amenities and environment. Focus groups results showed that domains of highest importance for measure inclusion were home dialysis staff education and patient-centered communication, care coordination, and personalization of care (Figure). Aspects of care prioritization exercise results confirmed focus group findings. Cognitive debriefing indicated that the final measure was easily understood and supported content validity.


The Home- DCE instrument is a 26-item patient-reported experience measure for use in peritoneal dialysis and home hemodialysis. Qualitative focus group and prioritization survey data support measure content validity. To our knowledge, the Home-DCE instrument represents the first rigorously developed and content valid English language survey instrument for assessment of patient-reported experience of care in home dialysis.

c Copyright 2020 -2021 American Society of Nephrology. Reproduced with permission.
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