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Study shows patients with CKD and care providers are at odds over life goals
In a survey of older adults with advanced CKD, nearly half indicated maintaining independence was their top health outcome priority — a goal that was at odds with their nephrology providers who were surveyed in the same study.
Most nephrologists believed their patients’ high-priority goal was to stay alive. “Nephrology providers demonstrated limited knowledge of their patients’ priorities,” study co-author Sarah J. Ramer, MD, wrote.
Ramer, from the Icahn School of Medicine at Mount Sinai in New York, and researchers surveyed 271 patients 60 years or older with advanced (stage 4 or 5) non-dialysis-dependent kidney disease who were receiving care at a CKD clinic. Patients were asked to complete a validated health outcome prioritization tool. For each patient, the nephrologist caring for the patient was asked to complete the same survey. Patients also answered questions to assesses their health and completed an end-of-life scenarios instrument.
“We examined the associations between priorities and self-reported health status and between priorities and acceptance of common end-of-life scenarios, and also measured concordance between patients’ priorities and providers’ perceptions of priorities,” the researchers wrote.
Among patients who completed the survey, the top health outcome priority was maintaining independence (49%), followed by staying alive (35%), reducing pain (9%) and reducing other symptoms (6%).
“Nearly half of patients ranked staying alive as the third or fourth priority,” Ramer and colleagues wrote.
After surveying nephrologists about their patients’ top health outcome priorities, respondents were correct 35% of the time.
“Patient-provider concordance for any individual health outcome ranking was similarly poor,” the researchers reported. “To help ensure that care is consistent with patients’ values, nephrology providers should understand their patients’ priorities when they make clinical recommendations.” – by Mark E. Neumann
Disclosures: This work was supported by National Institute of Diabetes and Digestive and Kidney Diseases grants K24 DK62849 (T.A.I.) and K23DK090304 (K.A.-K.) and National Center for Advancing Translational Sciences Clinical and Translational Science Awards UL1TR000445 and UL1TR002243, all from the NIH; the Satellite Health Norman Coplon Extramural Grant Program (K.A.-K.); and the Vanderbilt Center for Kidney Disease. The authors report no relevant financial disclosures.
Perspective
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There is a consensus in medicine that patient-centered care is a key element of high-quality care. The National Academy of Medicine, formerly known as The Institute of Medicine, defined patient-centered care as care that is respectful of and responsive to individual patient preferences, needs and values.
In that light, it is of concern that the study by Ramer and colleagues found that only 35% of nephrology providers accurately perceived their older CKD patients’ health care priorities. A priority is something a patient values highly. Of four health outcome priorities — maintaining independence, staying alive, treatment of pain and treatment of symptoms — three-quarters of the patients prioritized maintaining independence as their first or second priority, with half ranking it as their first. For a third of patients, staying alive was their top priority. The providers’ overall agreement on their patients’ outcome priorities was a disappointing Cohen’s Κ of 0.1. A K score of 1 indicates perfect agreement; 0 indicates the level of agreement expected by chance alone.
These findings could be written off as those of a single-center study in a small population of patients (271) and providers (14) except for the fact that it confirms similar findings in other studies of the CKD and ESRD population. What are we to make of these findings? How do we “fix” them?
As Ramer and colleagues note, communication skills training is lacking in nephrology fellowship programs, and communication resulting in shared decision-making with CKD and dialysis patients in most studies is suboptimal. Nephrologists cannot be patient-centered in their care without knowing their patients' values and priorities.
Because it is a component of quality patient care, nephrologists or other kidney care team members need to find out from patients what is most important to them in their treatment, maintaining independence or staying alive as long as possible. These questions need to be asked prior to the initiation of dialysis because some patients, who prefer maintaining independence, may choose to forgo dialysis in favor of a medical management without dialysis pathway. The challenge is to make these conversations routine. Knowing that individual patients vary in their priorities and that nephrology providers are not good judges of them should be the catalyst for us to initiate conversations with our patients.
Let’s start talking.
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Ramer SJ, et al. J Am Soc Nephrol.2018;doi:10.1681/ASN.2018060657.