Investigators have developed a 26-item home dialysis care experience instrument that they hope will be a resource for future research use, clinical care, and quality improvement initiatives in home dialysis.

The Home Dialysis Care Experience (Home-DCE) instrument is the first rigorously developed and content-valid English-language instrument for assessment of patient-reported experience of care in home dialysis. Investigators describe the new tool in the Clinical Journal of the American Society of Nephrology.

“The Home-DCE instrument addresses an important gap in current clinical care, which is the lack of availability of a rigorously developed tool for assessing patient’s experience of care in home dialysis,” said investigator Matthew B. Rivara, MD, an assistant professor of medicine at Harborview Medical Center at the University of Washington, Seattle, Washington. “It is particularly important in the current moment given the recent rapid growth in adoption of home dialysis, and current health policy priorities to increase the percentage of dialysis patients choosing dialysis at home.”

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More than 520,000 patients are undergoing maintenance dialysis in the United States, the majority of which receive in-center hemodialysis (HD), Dr Rivara and his colleagues noted. Use of home dialysis modalities, however, is growing rapidly. Until now there has not been a patient-reported experience measure that assessed the patient experience of care for peritoneal dialysis or home HD.

Development of Home-DCE

The investigators conducted a structured literature review and used focus groups for the development of the Home-DCE instrument. The team gathering qualitative and quantitative data from more than 150 individuals, including 21 patients on home dialysis, 33 home dialysis nurses, 3 patient care partners, and 8 nephrologists. A list of candidate items for possible measure inclusion was assessed by 91 patients on home dialysis and 39 providers using a web-based platform.

The literature review and use of focus groups confirmed 15 domains of home dialysis care experience in 6 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.

The focus group results showed that domains of highest importance for measure inclusion were patient education and communication, care coordination, and personalization of care. “What surprised us was just how important these aspects of care were not only for patients, but also for nephrologists, nurses, and dialysis technicians as well,” Dr Rivara told Renal & Urology News.

Surprising Findings

“One of the other surprising findings, was that some of the aspects of care, which we suspected would be rated as highly important such as home visits by nurses, timeliness of laboratory results, and being seen promptly for appointments, while still important, were rated as much less important than basic issues around communication, respect, and care coordination.”

Home dialysis gives patients more independence and flexibility with their treatment schedules, and is associated with similar or better outcomes and lower costs compared with conventional in-center HD, according to the investigators. Home dialysis modalities are the fastest growing types of dialysis treatments in the United States, and the authors noted that this trend is likely to continue as recent policies provide incentives to dialysis providers and to kidney specialists to promote home dialysis.

After the investigators interviewed home dialysis patients, home dialysis nurses, patient care partners, and kidney specialists, they conducted a national stakeholder survey to prioritize important elements of care. The researchers are conducting an additional study to analyze results from a survey of a large population of patients on home dialysis. “In nephrology, we often focus on numbers, blood pressure, Kt/V, phosphorus, and potassium levels,” Dr Rivara said. “For patients, other aspects of their care may be far more important, but difficult to quantify.”

The Home-DCE instrument helps quantify some of these aspects of home dialysis patient care experience, and may allow home dialysis providers to better target quality improvement efforts to areas that have been demonstrated to be important from the patient perspective, according to Dr Rivara.

The instrument is publicly available for use in clinical practice. The investigators are completing additional studies to test the instrument’s measurement properties so that it can be used in the future in clinical trials and other research. “We hope for these results to be available and published later in 2021. Availability of the Home-DCE will improve and expand the patient’s voice in dialysis care and research, which is an important step forward for the growing population of home dialysis patients,” Dr Rivara said.

In an accompanying editorial, Brian M. Brady, MD, and Manjula Kurella Tamura, MD, both of Stanford University School of Medicine in Palo Alto, California, wrote that “this laudatory work meets an important need for quality measurement tools in home dialysis, and comes at a moment when two decades of federal policies incentivizing patient-centered care and promoting home dialysis intersect.”

Nephrologist Tyrone Harrison, MD, of the University of Calgary, Canada, said the HOME-DCE tool fills an important gap of understanding what patient-reported experience measures are most important for home dialysis patients. “Though they prioritized some items similarly to in-center counterparts, there were several important priorities that were identified that are unique to the home dialysis population,” Dr Harrison said. “These measures were patient and care provider prioritized, and identified with a rigorous mixed methods study design, and so these measures are absolutely valid and clinically relevant.”

After it is fully evaluated and field tested, this test could be broadly implemented. “Patient-reported outcome measures and patient-reported experience measures are important in quality assurance for patient-centered, high-quality care, and are used as outcomes in research studies,” said nephrologist Catherine Clase, MD, an associate professor at McMaster University in Hamilton, Ontario, Canada. “This carefully-developed instrument will be an asset to clinicians and researchers working in home dialysis, and to their patients.”

She said this tool is an important advance because having good instruments to measure patient experience is key to improving that experience. “If we don’t know how well we are doing, it is difficult to improve, and impossible to know we are improving,” Dr Clase said. “Patients should be at the center of health care and measuring their experience of health care is critical. Patients who do their dialysis at home face many issues that other patients would not experience, and so it is important to have a measure designed specifically for them.”



Rivara MB, Edwards T, Patrick D, et al. Development and content validity of a patient-reported experience measure for home dialysis. Clin J Am Soc Nephrol. 2021;16:588-598. doi:10.2215/CJN.15570920 

Brady BM, Tamura MK. Measuring patient experience with home dialysis in the United States. Clin J Am Soc Nephrol. 2021;16:508-510. doi:10.2215/CJN.01990221