Patient Perceptions and Experiences of ESRD Care: Quality and Satisfaction

Abstract

Related Articlep. 440 Related Articlep. 440 As health care reform unfolds, there will be a clear change in the focus of health care delivery as we move to a “patient-centered care” approach.1Bardes M.D. Defining “patient-centered medicine.”.N Engl J Med. 2012; 366: 782-783Crossref PubMed Scopus (172) Google Scholar, 2Barry M.J. Edgman-Levitan S. Shared decision making—the pinnacle of patient-centered care.N Engl J Med. 2012; 366: 780-781Crossref PubMed Scopus (1876) Google Scholar While this term is now being used commonly, its meaning may not always be so clear. Patient-centered care involves active participation by patients and their family and/or caregivers to determine the type, nature, and standard of care that is best suited to maximize the individual's quality of life. The goal is to empower the individual to make informed decisions. The focus shifts from an insistence on adherence and compliance to collaboration, dialogue, and cooperation. The role of the health care provider shifts to focusing on providing patients with the tools and knowledge to make their own decisions and guide their own treatment. Patient choice becomes most important with a focus on outcomes—outcomes that matter to patients. Thus, the nature and character of the relationship between the patient and the provider changes, and understanding this relationship becomes critically important if patients are to comprehend the complexities of their care and actively participate in decisions about their care. What is surprising in some ways is how few investigations have been undertaken to understand the nature of the relationship between patients with end-stage renal disease (ESRD) and their health providers.3Juergensen E. Wuerth D. Finkelstein S.H. Juergensen P.J. Bekui A. Finkelstein F.O. Hemodialysis and peritoneal dialysis: patients' assessment of their satisfaction with therapy and the impact of the therapy on their lives.Clin J Am Soc Nephrol. 2006; 1: 1191-1196Crossref PubMed Scopus (131) Google Scholar, 4Rubin H.R. Fink N.E. Plantinga L.C. Sadler J.H. Kliger A.S. Powe N.R. Patient ratings of dialysis care with peritoneal dialysis vs hemodialysis.JAMA. 2004; 291: 697-703Crossref PubMed Scopus (233) Google Scholar Thus, the article in this issue of AJKD by Paddison et al addressing the experiences of care among 3,794 Medicare beneficiaries with ESRD is of particular interest.5Paddison C.A.M. Elliott M.N. Haviland A.M. et al.Experiences of care among Medicare beneficiaries with ESRD: Medicare consumer assessment of healthcare providers and systems (CAHPS) survey results.Am J Kidney Dis. 2013; 61: 440-449Abstract Full Text Full Text PDF PubMed Scopus (42) Google Scholar Of note, the comparisons between these ESRD patients and approximately 820,000 non-ESRD Medicare beneficiaries indicate that the ESRD patients are at least as satisfied (if not more) with their overall care. Six composite outcomes in 4 care domains (access to care, doctor communication, customer service, and access to prescription drugs and drug information) and 4 ratings (overall care, personal physician, specialist physician, and prescription drug plan) were used to examine the patients' experiences. ESRD patients reported better care experiences for 7 of these 10 measures than non-ESRD patients. However, the adjusted mean differences was less than 3 points on a 0-100 scale. While these observations are encouraging in terms of the care provided to ESRD patients, there are some findings that deserve special attention. Examples of note include the less-positive experiences reported by blacks compared to whites and by patients with low educational levels compared to those with higher educational levels. These differences are small but clearly present. The reasons for the differences are not obvious and certainly warrant further study. Also, Hispanic patients reported greater satisfaction on several domains compared to whites, which suggests that the relationship between racial or ethnic background and satisfaction may be complex. Lower scores in terms of educational levels were only seen for patients with no more than an 8th-grade level of education. It is of interest that the relationship between educational background and satisfaction does not hold consistently in the general Medicare population. However, it does hold for patients with other chronic diseases, such as diabetes.5Paddison C.A.M. Elliott M.N. Haviland A.M. et al.Experiences of care among Medicare beneficiaries with ESRD: Medicare consumer assessment of healthcare providers and systems (CAHPS) survey results.Am J Kidney Dis. 2013; 61: 440-449Abstract Full Text Full Text PDF PubMed Scopus (42) Google Scholar Whether this reflects problems with literacy and the ability to understand complex medical conditions such as ESRD needs to be studied further. The issues involving patient satisfaction with care are very important to address as health care moves to a patient-centered model. However, the Paddison study leaves some important questions unanswered. Perhaps most importantly, what is the relationship between patient satisfaction with care and the actual safety, efficacy, and standards and quality of care delivered? Our goal as health providers is to deliver the best care in a manner that results in patient comfort, safety, and satisfaction. Satisfaction should not be an end in itself—it must be viewed in the context of the quality of care delivered. For example, if drugs are efficiently delivered at low cost to patients but the wrong drugs are prescribed, then patients might be satisfied with their experience but perhaps have worse outcomes. Similarly, if the proper drugs are prescribed, but patients are unable to obtain them because of logistic constraints or they are unwilling to take them because of poor understanding about the importance of taking these drugs, then care will be undermined. Thus, developing instruments and strategies to integrate the assessment of quality, efficacy, and safety of care with patient satisfaction need to be further explored for ESRD patients. Second, does the questionnaire ask the right questions? The concerns of ESRD patients may be different than those of the nondialysis population, and a generic instrument to measure patient experience may not capture their priorities. To assess their satisfaction with care, should we actually be talking to ESRD patients (individually and/or in focus groups) in order to better understand the issues that are important to them and to define the arenas that these patients would like to focus on? Would this not be appropriate in a patient-centered world? Third, some differences are noted between ESRD and non-ESRD patients in this study. While these differences are statistically significant, are they clinically meaningful? It is difficult to know if small but statistically significant differences reported by patients using standardized instruments are meaningful to the patients. This problem has created dilemmas for investigators as patient-reported outcomes are being used more frequently as validated outcome measures of clinical trials.5Paddison C.A.M. Elliott M.N. Haviland A.M. et al.Experiences of care among Medicare beneficiaries with ESRD: Medicare consumer assessment of healthcare providers and systems (CAHPS) survey results.Am J Kidney Dis. 2013; 61: 440-449Abstract Full Text Full Text PDF PubMed Scopus (42) Google Scholar, 6Wu A.W. Fink N.E. Cagney K.A. et al.Developing a health-related quality-of-life measure for end-stage renal disease: the CHOICE health experience questionnaire.Am J Kidney Dis. 2001; 37: 11-21Abstract Full Text Full Text PDF PubMed Google Scholar, 7Hayes R.D. Wooley J.M. The concept of clinically meaningful difference in health-related quality of life research.Pharmacoeconomics. 2000; 18: 419Crossref PubMed Scopus (376) Google Scholar, 8Samsa G. Edelman D. Rothman M.L. et al.Determining clinically important differences in health status measures: a general approach with illustration to the Health Utilities Index Mark II.Pharmacoeconomics. 1999; 15: 141-155Crossref PubMed Scopus (691) Google Scholar A final consideration is whether, in a truly multidisciplinary approach to health care, which is what ESRD care is all about, patients really can separate out the contribution of the nephrologist from the rest of the patient care team. The model of health care delivery for the ESRD patient is very different than that provided by the primary physician in a free-standing office or clinic, in which care is very dependent on the relationship between the physician and the patient. The relationships of the ESRD patient with health care providers may be complex. Hemodialysis patients generally see the health care team 3 times a week and see the nephrologist 1 to 4 times per month in a dialysis facility. Peritoneal dialysis patients generally see a multidisciplinary team, including the nephrologist, once a month in a clinic environment. The patient may view the nephrologist as part of a broad health care team coordinating his or her care. Thus, comparing the reports of ESRD patients to other patients with complex, chronic illnesses, such as malignancies and diabetes, where care may be rendered by a multidisciplinary team may be informative. Despite these concerns, the paper by Paddison et al is an important advance in the way ESRD providers should be thinking about patient care. While it is essential that quality, safety, and efficacy standards be maintained, we need to focus additional attention on patients' experiences and perceptions of care. We need to identify domains that are of concern and importance for patients. We need to understand how care can be modified to improve patients' experience and perceptions and to identify the barriers and impediments that may compromise patient care and undermine our best efforts to improve outcomes. Support: None. Financial Disclosure: The authors declare that they have no relevant financial interests. Experiences of Care Among Medicare Beneficiaries With ESRD: Medicare Consumer Assessment of Healthcare Providers and Systems (CAHPS) Survey ResultsAmerican Journal of Kidney DiseasesVol. 61Issue 3PreviewPatients with end-stage renal disease (ESRD) have special health needs; little is known about their care experiences. Full-Text PDF Open Access