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May 18, 2021
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Clinicians can improve care with measures linked to patient experiences

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Nephrologist Fredric Finkelstein, MD, thinks of reviewing art when he explains the value of using patient-reported outcome measures in his dialysis program.

“An art critic from the New York Times once wrote that individuals who see the same piece of art may see it differently and appreciate it differently,” Finkelstein said during a presentation at a recent nephrology conference.

We are all individuals, he said, and “we, as nephrologists, have to capture that unique experience of the individual in our patients.”

Fredric Finkelstein, MD, a clinical professor of medicine at Yale University School of Medicine, said he connects patient-reported outcomes measures with critique of art, like this piece from Howard Hodgkin entitled “Afternoon Flowers.”

Source: Fredric Finkelstein, MD

Finkelstein, a clinical professor of medicine at Yale University School of Medicine, said patient-reported outcomes measures, or PROMs, are the best way to capture that unique experience. Another dimension relates to measuring the PREMs – patient-reported experience measures – which can be combined with PROMs to connect with patients’ views about their care.

The traditional approach to assessing patient health – solely using lab results – is “totally inappropriate” in the dialysis clinic, Finkelstein told Nephrology News & Issues. “From my perspective, a major gap in nephrology is our reliance on big data to provide treatment and not focusing on the individual patient and personal care,” Finkelstein said. “What we don’t focus on and appreciate is the unique issues and problems that our patients experience.”

History of PROMs

In 1969, Enid Balint, BSc, a case work consultant for the Tavistock Institute of Human Relations in London and member of the British Psycho-Analytical Society, presented the idea of a more personalized look at patient outcome measures. He wrote: “ ... There is another way of medical thinking which we call ‘patient-centered medicine.’ Here, in addition to trying to discover a localizable illness or illnesses, the doctor also has to examine the whole person in order to form what we call an ‘overall diagnosis.’

“This should include everything the doctor knows and understands about [the] patient; the patient, in fact, has to be understood as a unique human being.”

Finkelstein said his early days in nephrology – the 1960s and into the 1970s – included “sit down” rounds where he joined other nephrologists to discuss patient cases and review patient responses to treatment. “That has been completely replaced by a focus on Kt/V, the dose of hemoglobin and eGFRs,” he said. “That is an obsession in the dialysis units now.”

Tufts University nephrologist Michael Germain, MD, agrees with Finkelstein that such indicators are a poor measure of patient outcomes.

“Patient don’t necessarily care about what their lab results are, what the Kt/V is or whether they can get an extra 6 months of life. My impression is that they would trade all of that for a chance to feel better,” Germain said.

Michael Germain

Individualized care is the key, Finkelstein said.

“The focus everywhere else in the world is on PROMs – how do patients feel, what are their symptoms. They are all shifting to the utilization of PROMs as outcomes measures that should be reviewed. But there is really no room to do that in the U.S. [dialysis] system,” he said.

Others see an opportunity to utilize patient reported outcomes to help relieve the stress of kidney disease on patients. “There is opportunity for increased application of [patient-related outcomes] PROs to improve clinical monitoring of patients’ health and treatment evaluation in ESKD,” John D. Peipert, PhD, and Ron D. Hays, PhD, of the Northwestern University Feinberg School of Medicine, Chicago, wrote in the Journal of the American Society of Nephrology. “Previous research comparing disease burden of several chronic conditions found that patients with ESKD had worse physical functioning than any of the other conditions included in the study (eg, diabetes, symptomatic AIDS), with the exception of multiple sclerosis.

“The recent work of the Standardized Outcomes in Nephrology group has corroborated these ndings and demonstrated that ESKD patients and caregivers prioritize outcomes like fatigue, ability to travel, overall effect of ESKD on the family, and ability to work over more traditional outcomes such as mortality and hospitalizations,” Peipert and Hays wrote. “The time is ripe to expand and rene the use of PROs with patients with ESKD.”

Medicare and quality

Part of the challenge of bringing PROMs to the forefront in the United States is that federal agencies, like CMS, have focused only on clinical measures, ignoring the patient side of the equation, Wael Hussein, MD, senior director of clinical research at Satellite Healthcare and an adjunct assistant professor at Stanford School of Medicine, told Nephrology News & Issues.

Wael Hussein

“We are measuring the wrong indicators that tell us little about how we are achieving the patient’s goals,” he said.

Hussein said decisions by CMS to tie quality measures that focus on lab results to reimbursement rather than on patient experiences has pushed aside the physician-patient relationship, where patients can share how dialysis has impacted their health.

“... [W]e pat ourselves on the shoulder for achieving outcome measures such as Kt/V and biomarkers that most patients do not understand,” Hussein wrote in a column for Nephrology News & Issues on World Kidney Day. “We currently shy away from patient-reported outcome measures (PROMs) because we do not know how to measure these easily and objectively,” Hussein wrote. “PROMs are also affected by factors we do not usually pay attention to, including social determinants of health. We need to evolve our use of PROMs as quality metrics and integrate these in patient care.”

Some of these outcome measures were outlined by Finkelstein in an article published in Peritoneal Dialysis International. These can include common complaints like itching, pain, restless leg syndrome, loss of appetite, fatigue, bone or joint discomfort and muscle cramps.

While the idea of tracking and evaluating PROMs may seem more intensive, Finkelstein and colleagues wrote clinicians can use techniques like computer adaptive technology to collect data “in which the computer adapts questions based on patient responses.”

PROM: Fatigue

One of the most common patient-reported experiences is fatigue, Germain said.

“What you find when you talk with the patient is that fatigue is often overwhelming – it’s not just after dialysis. It can be all the time. It is a significant part of being uremic.”

Germain helped to develop patient-reported outcome measures for fatigue as part of the Standardized Outcomes in Nephrology (SONG) initiative, an effort led by Australian nephrologists to create patient experience outcomes measures related to dialysis. Clinicians from the United Kingdom and the United States also took part in the research.

The outcomes were developed “based on the shared priorities of patients, caregivers, clinicians, researchers, policy makers and relevant stakeholders,” according to the SONG website. Core outcomes for hemodialysis, transplantation, peritoneal dialysis, children and adolescents and for patients with polycystic kidney disease were developed.

During his work on the SONG study groups, Germain understood how outcome measures like fatigue blend into other PROMs – but often escape notice by caregivers.

“Fatigue often had something to do with sleep disorders [and] something to do with depression and pain,” Germain said.

Patient assessment

Hussein said Satellite Healthcare have developed a program called Optimal Transitions. New patients receive special attention when they go through transitional care units, he said.

“I tell our staff, ‘Connect with the patient. Get them to know you. That first week is important,’” Hussein said.

But staff sometime struggle with asking personal questions.

“‘Tell me about them. Tell me about them as a person. Tell me about them like you would tell me about your friend,’” Hussein said he tells clinic staff. “‘You need to know this information. Get to know the patient. Don’t use a pencil and paper.’”

Finkelstein said CMS should mandate use of PROMs in the patient care plan.

“Giving out a patient survey twice a year or conducting a depression screening just doesn’t accomplish much,” he said. “Patient symptoms vary over time. We need to get PROMs out on a repetitive basis.”

Hussein said. “A patient thinks, ‘I do not care about whether my dialysis clinic has achieved X percentage of dialysis clearance above a target. I care more about my itch, or not being able to sleep or not being able to work,’” he said.

“Changing those outcomes is what will make a difference in our patients’ lives.”