Fredric O. Finkelstein, MD
Dr. Finkelstein is Clinical Professor of Medicine at Yale University. He is Chair of the CME Program of the ISN and Chair of the International Liaison Committee of the ISPD. His research interest focuses on PD treatment for AKI, health-related quality of life of CKD patients, and expanding patient centered care.
Competitors for the Trial Outcomes Region
Medicine in the 21st century is undergoing major changes, which are revolutionary in many ways. Perhaps the most significant developments have involved a change in focus to a personalized approach to health care. That is, the focus has shifted from a broad, global, population approach to an emphasis on the individual patient and designing treatments that maximize an individual’s health and quality of life. This then underscores a tacit understanding by the healthcare provider that each patient is unique and should be treated as an individual. Standardization of care for all is no longer acceptable – one size does not fit all.
Nephrology has lagged behind other specialties in emphasizing this approach. Oncology has perhaps spearheaded this approach with advances in chemotherapy and assessments of the impact of treatment on patients’ quality of life. It is now time for nephrology to recognize and address the challenges that have limited us from emphasizing this approach.
This opens interesting opportunities for research and study. How do we design approaches to healthcare for the patient with kidney disease which would emphasize that individual’s values, goals, and aspirations, and then tailoring their treatment accordingly?
Let’s take the case of a patient with end-stage renal disease (ESRD) with multiple symptoms and comorbidities that require numerous medications. Assessing that patient’s symptoms becomes challenging while addressing complex treatment regimens. What is clear is that healthcare providers do not fully appreciate patients’ symptoms or the impact of treatment regimens on patients’ quality of life.
For example, in dialysis facilities, attention is focused on “objective” measures, such as Kt/V, hemoglobin levels, albumin levels, etc. In the US, this is driven in large part by financial penalties imposed on providers by the CMS if some of these pre-determined measures are “out of range.” Because of these regulations, dialysis providers have obsessed about conforming to arbitrary regulations.
In this environment, the individualization of patient care is not possible. Do peritoneal dialysis (PD) patients really feel better if they stay on the cycler another hour to achieve a Kt/V of 1.75 rather than 1.65? Does a hemoglobin of 10.2 really make a patient feel better than a hemoglobin of 9.8? Our thinking needs to change!
Questions to ponder in this scenario:
- Why is the percent of patients on home therapies as low as it is in the US compared to countries like Canada and Australia?
- Are patients really being provided objective information to make informed choices?
- How should information be provided to patients?
- What provides patients with an understanding of the implications and risks of hemodialysis-induced hypotension, post-dialysis fatigue, etc?
- What about the risks of peritonitis for PD patients?
- Are the benefits of more frequent and/or prolonged hemodialysis treatments being clearly outlined for patients?
- Have we paid enough attention to the patients’ perspectives, or are patients being directed to the care that dialysis facilities endorse and champion?
We must remember that for patients, as well as all of us, “knowledge is power” – patients must be empowered to participate in decision-making and learn how to recognize “fake news.”
The same applies for patients with chronic kidney disease (CKD). Trials have routinely focused on such “objective” measures as rate of change of eGFR, serum creatinine, and/or degree of proteinuria. What about how the patient feels? How do treatments impact an individual’s quality of life? How do we incorporate such measures into clinical trials? What are the risks and benefits of treatment algorithms for symptoms such as pain and pruritus? Which then raises the question of how we measure health-related quality of life (HRQOL) and incorporate these measurements into routine patient care and research protocols.
Surprisingly, little research has addressed these issues. Instead of thinking creatively, we have relied on dictates from CMS and dialysis providers to make these assessments. For ESRD patients, we are now mandated by CMS to assess the “patients'” view” by using the In-Center Hemodialysis Survey Consumer Assessment of Healthcare Providers and Systems (ICH-CAHPS) semi-annually in addition to the annual assessment of HRQOL using the KDQOL-36 plus pain and depression evaluation.
However, this is neither sufficient nor really helpful. The ICH-CAHPS simply assesses a patient’s “satisfaction” with their care, but tells you nothing about their perception of their quality of life. And the annual assessment using the other measures ignores the problem of marked variability in perceptions over time and limits the assessment to the domains covered in the questionnaires. Perhaps most importantly, they are not helpful in directing healthcare providers how to modify treatment regimens to improve quality of life.
How best to assess the HRQOL of patients is a subject that needs to be explored outside the strictures of mandated protocols. Work in other branches of medicine has used electronically administered instruments to investigate and better understand patient symptoms. These have been shown to reduce emergency department visits and improve patients’ HRQOL. Computer-adaptive technologies, in which electronically administered questions adapt to the patient responses, have been used to investigate patient’s HRQOL and psychosocial status. This permits questionnaires to be administered repeatedly since the questionnaires change each time the questionnaire is used, depending on patient responses.
Can HRQOL for patients with CKD and ESRD be improved? The answer is yes. Dialysis regimens can be modified. Various symptoms can be addressed. Depression can be treated. Sleep disturbances, pruritus, restless legs, etc. can also be dealt with. But the treatment of symptoms needs to be put in the context of the individual patient’s experience. For example, pain and its management has attracted much attention recently. A delicate balance exists between relieving a patient’s pain and avoiding potentially serious side effects. This requires better communication, thought, and individualization of patient care.
Developing a patient-centered approach to nephrology care is one of the most exciting developments in our specialty. Creative thinking is necessary and affords the nephrology trainee and researcher a wonderful opportunity to think innovatively in exploring new, exciting, and meaningful approaches.
– Post written by Fredric O. Finkelstein
As with all content on the AJKD Blog, the opinions expressed are those of the author of each post, and are not necessarily shared or endorsed by the AJKD Blog, AJKD, the National Kidney Foundation, Elsevier, or any other entity unless explicitly stated.