Skip to main content

Advertisement

Log in

Measuring patient experience in dialysis: a new paradigm of quality assessment

  • Review
  • Published:
Journal of Nephrology Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. US Renal Data System (2015) USRDS 2015 Annual Data Report: Atlas of end-stage renal disease in the United States. Bethesda

  2. Akizawa T (2010) Current status of dialysis therapy and related clinical guidelines in Japan. Jpn Med Assoc J 53(3):185–187

    Google Scholar 

  3. Masakane I, Nakai S, Ogata S, Kimata N, Hanafusa N, Hamano T, Wakai K, Wada A, Nitta K (2015) An overview of regular dialysis treatment in Japan (as of 31 December 2013). Ther Apheresis Dial Off Peer Rev J Int Soc Apheresis Jpn Soc Apheresis Jpn Soc Dial Ther 19(6):540–574. doi:10.1111/1744-9987.12378

    Article  CAS  Google Scholar 

  4. ERA-EDTA Registry: ERA-EDTA Registry Annual Report 2014. Academic Medical Center, Department of Medical Informatics, Amsterdam, The Netherlands, 2016

  5. Richardson MM, Grobert ME (2014) ICH-CAHPS: what signal on the chadburn? Am J Kidney Dis 64(5):670–672

    Article  PubMed  Google Scholar 

  6. Cavanaugh KL (2016) Patient experience assessment is a requisite for quality evaluation: a discussion of the In-Center Hemodialysis Consumer Assessment of Health Care Providers and Systems (ICH CAHPS) Survey. Semin Dial 29(2):135–143. doi:10.1111/sdi.12469

    Article  PubMed  Google Scholar 

  7. Kliger AS (2016) Quality measures for dialysis: time for a balanced scorecard. Clin J Am Soc Nephrol CJASN 11(2):363–368. doi:10.2215/CJN.06010615

    Article  PubMed  Google Scholar 

  8. Weidmer BA, Cleary PD, Keller S, Evensen C, Hurtado MP, Kosiak B, Gallagher PM, Levine R, Hays RD (2014) Development and evaluation of the CAHPS (Consumer Assessment of Healthcare Providers and Systems) survey for in-center hemodialysis patients. Am J Kidney Dis Off J Natl Kidney Found 64(5):753–760. doi:10.1053/j.ajkd.2014.04.021

    Article  Google Scholar 

  9. Wood R, Paoli CJ, Hays RD, Taylor-Stokes G, Piercy J, Gitlin M (2014) Evaluation of the consumer assessment of healthcare providers and systems in-center hemodialysis survey. Clin J Am Soc Nephrol CJASN 9(6):1099–1108. doi:10.2215/CJN.10121013

    Article  PubMed  Google Scholar 

  10. Breckenridge K, Bekker HL, Gibbons E, van der Veer SN, Abbott D, Briancon S, Cullen R, Garneata L, Jager KJ, Lonning K, Metcalfe W, Morton RL, Murtagh FE, Prutz K, Robertson S, Rychlik I, Schon S, Sharp L, Speyer E, Tentori F, Caskey FJ (2015) How to routinely collect data on patient-reported outcome and experience measures in renal registries in Europe: an expert consensus meeting. Nephrol Dial Transplant Off Publ Eur Dial Transpl Assoc Eur Ren Assoc 30(10):1605–1614. doi:10.1093/ndt/gfv209

    Google Scholar 

  11. Richardson M “Patient engagement, patient satisfaction, patient experience of care: What’s the difference?” Forum ESRD Networks Webinar: the experience of care: patients and providers as partners, September 14, 2016

  12. Get Health Plan Surveys and Instructions. https://www.ahrq.gov/cahps/surveys-guidance/hp/instructions/index.html. Accessed 20 March 2017

  13. RAND Health Dialysis Patient Satisfaction Survey. http://www.rand.org/health/surveys_tools/dpss.html. Accessed 31 Dec 2016

  14. Kalantar-Zadeh K, Unruh M (2005) Health related quality of life in patients with chronic kidney disease. Int Urol Nephrol 37(2):367–378. doi:10.1007/s11255-004-0012-4

    Article  PubMed  Google Scholar 

  15. Centers for Disease Control and Prevention. Health Related Quality of Life. https://www.cdc.gov/hrqol/. Accessed 1 Dec 2016

  16. Finkelstein FO, Wuerth D, Finkelstein SH (2009) Health related quality of life and the CKD patient: challenges for the nephrology community. Kidney Int 76(9):946–952. doi:10.1038/ki.2009.307

    Article  PubMed  Google Scholar 

  17. Naik N, Hess R, Unruh M (2012) Measurement of health-related quality of life in the care of patients with ESRD: isn’t this the metric that matters? Semin Dial 25(4):439–444. doi:10.1111/j.1525-139X.2012.01110.x

    Article  PubMed  Google Scholar 

  18. Slinin Y, Guo H, Li S, Liu J, Morgan B, Ensrud K, Gilbertson DT, Collins AJ, Ishani A (2013) Predictors of provider-patient visit frequency during hemodialysis. Am J Nephrol 38(2):91–98. doi:10.1159/000353565

    Article  PubMed  PubMed Central  Google Scholar 

  19. Plantinga LC, Fink NE, Sadler JH, Levey AS, Levin NW, Rubin HR, Coresh J, Klag MJ, Powe NR (2004) Frequency of patient-physician contact and patient outcomes in hemodialysis care. J Am Soc Nephrol JASN 15(1):210–218

    Article  PubMed  Google Scholar 

  20. CAHPS Surveys and Guidance. https://www.ahrq.gov/cahps/surveys-guidance/index.html. Accessed 26 Dec 2016

  21. Weidmer Ocampo B Field Testing of the CAHPS In-Center Hemodialsis Survey. 10th National CAHPS User Group Meeting, March 29–31, 2006

  22. van der Veer SN, Jager KJ, Visserman E, Beekman RJ, Boeschoten EW, de Keizer NF, Heuveling L, Stronks K, Arah OA (2012) Development and validation of the Consumer Quality index instrument to measure the experience and priority of chronic dialysis patients. Nephrol Dial Transplant Off Publ Eur Dial Transpl Assoc Eur Ren Assoc 27(8):3284–3291. doi:10.1093/ndt/gfs023

    Google Scholar 

  23. CAHPS In-Center Hemodialysis Survey. https://www.ahrq.gov/sites/default/files/wysiwyg/cahps/surveys-guidance/ich/about/about_cahps_in-center_hemodialysis_survey_2015.pdf. Accessed 1 Dec 2016

  24. Cavanaugh KL, Wingard RL, Hakim RM, Eden S, Shintani A, Wallston KA, Huizinga MM, Elasy TA, Rothman RL, Ikizler TA (2010) Low health literacy associates with increased mortality in ESRD. J Am Soc Nephrol JASN 21(11):1979–1985. doi:10.1681/ASN.2009111163

    Article  CAS  PubMed  Google Scholar 

  25. National Implementation and Public Reporting. https://ichcahps.org/GeneralInformation/NationalImplementationandPublicReporting.aspx. Accessed 6 Dec 2016

  26. Anhang Price R, Elliott MN, Cleary PD, Zaslavsky AM, Hays RD (2015) Should health care providers be accountable for patients’ care experiences? J Gen Intern Med 30(2):253–256. doi:10.1007/s11606-014-3111-7

    Article  PubMed  Google Scholar 

  27. Webinar #1. The Patient Perspective: what is the experience of care? Are we asking the right questions? http://esrdnetworks.org/education/quality-conference/quality-conference-2016-2017/webinar-1-slides-recording-and-q-a-document/q-a-document-webinar-1-the-patient-perspective-september-14-2016/at_download/file. Accessed 1 Dec 2016

  28. Scottish Renal Experience Patient Survey Reports. http://www.healthcareimprovementscotland.org/previous_resources/performance_review/renal_patient_survey.aspx. Accessed 26 Dec 2016

  29. van der Veer SN, Arah OA, Visserman E, Bart HA, de Keizer NF, Abu-Hanna A, Heuveling LM, Stronks K, Jager KJ (2012) Exploring the relationships between patient characteristics and their dialysis care experience. Nephrol Dial Transplant Off Publ Eur Dial Transpl Assoc Eur Ren Assoc 27(11):4188–4196. doi:10.1093/ndt/gfs351

    Google Scholar 

Download references

Acknowledgements

The authors are supported by research grants from the NIH/NIDDK (K23-DK102903 [CMR]).

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Steven M. Brunelli.

Ethics declarations

Conflict of interest

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.

Ethical approval

This article does not contain any studies with human participants performed by any of the authors.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

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

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s40620-017-0401-2

Keywords

Navigation