Researchers develop tool to assess satisfaction with home dialysis
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Researchers at George Washington University have developed a tool that can assess patients’ home dialysis experience, according to a recently published study.
“The population of patients with kidney failure in the United States utilizing home dialysis modalities is growing rapidly,” Matthew B. Rivara, MD, of the Kidney Research Institute, University of Washington, and colleagues wrote in their study. “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.”
The authors said the timing of the tool, called the Home Dialysis Care Experience (Home-DCE), is of value as the home dialysis population continues to grow and is a central focus of the Advancing American Kidney Health initiative.
In-center treated patients use the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems, but the “availability of a [patient-reported experience measure] PREM for home dialysis would help health care providers better align patients’ care to expectations and needs and help facilitate quality improvement efforts by dialysis facilities for this rapidly growing patient population,” the authors wrote.
Data collected from the tool can be a resource for future research use, clinical care and quality improvement initiatives among home dialysis facilities and organizations, as “Assessing patients’ experience of their home dialysis care is incredibly important to make sure that quality improvement efforts in home dialysis focus on areas that patients — not just doctors — consider important,” Rivara said in a press release about the study.
The investigators reviewed literature to identify domains of home dialysis care that could be important to address. “We conducted 10 focus groups between November 2016 and September 2017 in Seattle, Washington; these included one group for nephrologists, three groups for home dialysis nurses, four groups for home dialysis patients and one group for home dialysis patient care partners,” the authors wrote. This was followed by a national stakeholder survey to prioritize important elements of care. These efforts allowed the team to design a new survey tool to capture the home dialysis care experience.
“One important observation that we made in reviewing the results of our work was the central importance that all stakeholders — patients, care partners, doctors and nurses —placed on good consistent communication and care coordination. This was universally felt to be of greater importance in evaluating high quality home dialysis care from the patient’s perspective compared with other aspects of care such as facility cleanliness, timeliness of laboratory results and appointments, and a number of other factors,” Rivara said in the press release. “Another important finding was the consistency of our findings no matter who we spoke to. In general, patients, care partners, nurses and doctors all noted similar elements of home dialysis care that were the most important.”
An accompanying editorial by Brian M. Brady, MD, and colleagues noted that “As CMS works to improve the value of care delivered to patients with kidney failure and prioritize home dialysis modalities, the HOME-DCE developed by Rivara [and colleagues] represents the first English language patient-reported experience measure geared specifically at evaluating patient-reported experience with home dialysis care. This laudatory work meets an important need for quality measurement tools in home dialysis and comes at a moment when [2] decades of federal policies incentivizing patient-centered care and promoting home dialysis intersect.
“Further evaluation and implementation of this instrument has the potential to inform and reshape the quality of care we deliver to our patients undergoing home dialysis.”
References:
- Brady BM, et al. CJASN, 2021;doi:10.2215/CJN.01990221
- Rivara MB, et al. CJASN.2021;doi:10.2215/CJN.15570920
Perspective
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Wael Hussein, MBBS, MSc, MRCPI
As the kidney community aims to expand utilization of home dialysis, it is important for us to be able to maintain a high quality of patient care. Health care quality is defined by the Institute of Medicine as care that is patient‐centered, effective, efficient, timely and equitable.
It is critical that in our journey to expand home dialysis we be guided by the patient experience. This is measured using patient-reported experience measures (PREMs), which aim to capture what happened during the provision of care and how it happened from the perspective of the patient.
PREMs can support research, benchmark performance, guide policy and inform development of devices and patient care models. While validated instruments are in use to assess patient experience with in-center hemodialysis, no validated instruments are available to measure patient-reported experience of care in peritoneal dialysis or home hemodialysis in the United States.
Several other survey tools are available, but the use of non-standardized tools may miss important aspects of care, focus on areas not important for patients and use phrasing that is hard to understand or misleading. In addition, tools that have not been standardized or validated make it impossible to compare differences between dialysis centers and to assess changes in patient experience over time.
To address this gap, Rivara and colleagues, with support from the Norman S. Coplon Extramural Grant Program funded by Satellite Healthcare, developed the home dialysis care experience (home DCE), a validated survey that captures the home dialysis patient-reported experience. This focused effort on measuring the home dialysis patient experience represents years of work, supported through a nonprofit dialysis provider, highlighting the critical role these organizations play in advancing patient care, with re-investment in the initiatives that benefit patients and the kidney community at large.
Rivara and colleagues followed a rigorous approach, which built on what is available in the literature, and engaged in multiple phases with key stakeholders including patients, caregivers, nephrologists and home dialysis nurses.
Their effort resulted in a 46-item survey (26 core items, 20 demographics) in English and Spanish. The most important domains include patient-staff communication and education, concern and helpfulness of staff, care coordination and shared decision-making.
Additional refinement of the instrument is now required before widespread deployment. This requires field testing for issues such as validity and quantitative measurement properties. Additionally, the association of home-DCE scores with patient demographics or clinical characteristics is currently unknown. Caution is still needed in the use of the home DCE in patients outside of the backgrounds and languages in which it was validated.
As the home dialysis population grows, we need to assess how patient characteristics and characteristics of care delivery change as these may impact the utility of the survey.
It is heartwarming to see that the research community and the nephrology community at large are developing tools to enable person-centered care. Funders, providers and policy makers need to continue to support research in this field. Only then, can we have meaningful transformation of clinical care catering to the true needs of our patients.
Graham Abra, MD, clinical assistant professor in the division of nephrology at Stanford University and senior director of medical clinical affairs at Satellite Healthcare, was co-author on this perspective.
References:
Beattie M, et al. Journal of Research in Nursing. 2013;doi:10.1177/1744987112440568
Bull C, et al. Health Serv Res. 2019;doi:10.1111/1475-6773.13187
Rivara MB, et al. Clin J Am Soc Nephrol. 2021;doi:10.2215/cjn.15570920
Weidmer BA, et al. Am J Kidney Dis. 2014;doi:10.1053/j.ajkd.2014.04.021
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