Abstract
Patients’ experience of care (PEC) is as an important dimension in quality of care. As a distinct entity from patient satisfaction and patient health-related quality of life, PEC is defined as patients’ perceptions of the range of interactions they have with the health care system, including care from providers, facilities, and health plans. While traditionally PEC may be ascertained via informal assessments, in recent years, especially in the United States, there has been a shift towards standardized surveillance of PEC amongst dialysis patients in order to: (1) set a normative expectation regarding the importance of PEC; (2) standardize the components of patients’ experience that are assessed to minimize potential “blind spots”; (3) provide a direct “voice” to the patient in communicating perceptions of their care; (4) facilitate comparisons of quality across facilities; and (5) broaden accountability for PEC to the entire multidisciplinary dialysis care team. In this review, we will discuss the significance of PEC as a quality of care metric in dialysis patients; the history of PEC assessment across other health care arenas; the development of the In-Center Hemodialysis Consumer Assessment of Healthcare Provider and Systems survey as a means to standardize PEC assessment among US dialysis patients; experiences in PEC assessment across international dialysis populations; and future areas of research needed to refine the ascertainment of PEC and its impact upon patient outcomes.
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The authors are supported by research grants from the NIH/NIDDK (K23-DK102903 [CMR]).
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CMR has no disclosures to report. SMB is an employee of DaVita Inc. His spouse is employed by AstraZeneca. LS and FT are employees of Arbor Research Collaborative for Health which conducts the Dialysis Outcomes and Practice Patterns Study. The DOPPS Program is supported by Amgen, Kyowa Hakko Kirin, and Baxter Healthcare. Additional support for specific projects and countries is provided by Amgen, AstraZeneca, European Renal Association-European Dialysis and Transplant Association (ERA-EDTA), German Society of Nephrology (DGfN), Hexal AG, Janssen, Japanese Society for Peritoneal Dialysis (JSPD), Keryx, Proteon, Relypsa, Roche, Società Italiana di Nefrologia (SIN), Spanish Society of Nephrology, and Vifor Fresenius Medical Care Renal Pharma. Public funding and support is provided for specific DOPPS projects, ancillary studies, or affiliated research projects by Australia: National Health and Medical Research Council (NHMRC), Canada: Canadian Institutes of Health Research (CIHR) and Ontario Renal Network, France: Agence Nationale de la Recherche, Thailand: Thailand Research Foundation (TRF), Chulalongkorn University Matching Fund, King Chulalongkorn Memorial Hospital Matching Fund, and the National Research Council of Thailand (NRCT), United Kingdom: National Institute for Health Research (NIHR) via the Comprehensive Clinical Research Network (CCRN), United States: National Institutes of Health (NIH) and Patient-Centered Outcomes Research Institute (PCORI). All support is provided without restrictions on publications. FT has also received honorarium/consulting fees from the Renal Research Institute, Dialysis Clinic, Inc. (DCI), Amgen, and Medscape.
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Rhee, C.M., Brunelli, S.M., Subramanian, L. et al. Measuring patient experience in dialysis: a new paradigm of quality assessment. J Nephrol 31, 231–240 (2018). https://doi.org/10.1007/s40620-017-0401-2
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DOI: https://doi.org/10.1007/s40620-017-0401-2