Renal Community Loses a Patient Champion
I didn’t even know he’d been ill! So, learning via Facebook that Peter DeOreo, a long-time nephrologist and Chief Medical Officer of the non-profit Centers for Dialysis Care (CDC) in Ohio, had passed away this week came as a very unwelcome shock. While I only had the chance to meet him a few times in person, Peter was a good, kind person and a genuine champion for patients—and the renal community has lost a true innovator.
The first time I encountered Peter was probably 20 years ago at a National Kidney Foundation Spring Clinical meeting in Chicago, where he was speaking about the value of measuring health-related quality of life. He’d done a study1 where 1,000 of his dialysis patients completed the SF-36 survey over a 2-year period. This survey, a paper-and-pencil patient self-assessment of physical and mental functioning, turned out to be far more important than even he might have imagined.
As it turned out, patients’ physical functioning, measured by the physical component summary (PCS) score predicted mortality as strongly as the normalized protein catabolic rate, or delivered Kt/V. Lower-than-median scores predicted 1.5 times the risk of a hospital stay or twice the risk of death as those whose scores were above the median. In addition, patients’ mental functioning, measured by the mental component summary (MCS) score was a good screener for depression. Like the meaning of life in The Hitchhiker’s Guide to the Galazy, the magic number was 42: an MCS score below that threshhold suggested depression.
At the time, we at the Medical Education Institute had been doing the Life Options Rehabilitation Program for about 5 years, so listening to Peter’s passionate talk about the value of patients reporting on their own lives was a revelation that fit right into our world view. The community had been using the Karnofsky scale prior to this. Professionals looked at patients and rated their “functional status” based on their own perceptions—on a scale from 100 (“Normal; no complaints; no evidence of disease”) to 0 (“Dead.”)
In the early 1990s, researchers had just started to look at and quantify “health-related quality of life” as physical and mental functioning, symptoms, and burden of illness, with various groups developing such measures as the SF-36, the Dartmouth Coop Charts, the Medical Outcomes Study SF surveys, and the Kidney Disease Quality of Life survey. So, Peter’s research, at this time, was revolutionary—and his data gave those of us who cared about patient input invaluable proof that how patients viewed their own lives was critical, and helped lay the groundwork for patient-centered care.
Based on his important work in the field, we invited Peter to join the Life Options Council, where he was a valuable contributor to the research workgroup, collaborating with MEI researcher Dr. Roberta Braun-Curtin and then-Fresenius affiliated Dr. Ed Lowrie on an opinion paper about the value of self-reported functional status for predicting health outcomes in ESRD.2 Science is not based on just one finding, of course. Results must be replicated. And, Peter’s important findings had been replicated—they just hadn’t yet been published. For years, Dr. Lowrie had circulated a tantalizing health-related quality of life findings from a large Fresenius data set in memo form. Working with Peter on the Life Options paper gave us the entrée to approach him to work with us on finally getting it into print. Dr. Lowrie’s paper was published in 2003 with almost 14,000 patients,3 and it found that both physical and mental functioning predicted hospitalization and death—even after adjusting for a raft of factors including age, gender, race, diabetes, serum albumin, creatinine, bicarbonate, potassium, phosphorus, hemoglobin, iron, ferritin, white blood cell count, dialysis dose, and more. This was just the 1-2 knockout punch the renal community needed to validate health-related quality of life measurement.
Since those articles came out, MEI worked with AAKP to push for a health-related quality of life clinical performance measure, and advocated with CMS to include health-related quality of life in the Conditions for Coverage for Dialysis Facilities to give patients a voice in their Plans of Care. We then built KDQOL-Complete—our scoring service to help the renal community track and interpret the results of the survey and use them to improve care. Peter rotated off of the Life Options Council, and I lost track of him, until recently.
At the NANT meeting last fall in Las Vegas, I learned that Peter was testing approaches to address one of the most vexing—and lethal—challenges faced by hemodialysis patients: how much water to remove at a treatment. At CDC, he helped develop a fluid management protocol to improve patient tolerance for ultrafiltration, with or without Intelomed’s CV Insight (CVI) monitoring technology. The goal was to identify dry weight to improve fluid management, and the protocol is described in this month’s issue of Nephrology News & Issues,4 and includes interventions like using cooler dialysate, reducing the UF goal, and using sequential hemodiafiltration and hemodialysis.
My sincere condolences to Peter’s family for the loss of a good man and good doctor far too soon. For those who are interested and able to attend, the service will be tomorrow at Our Lady of Peace at 12503 Buckingham Ave. in Cleveland, or you can share memories online here.
DeOreo PB. Hemodialysis patient-assessed functional health status predicts continued survival, hospitalization, and dialysis-attendance compliance. Am J Kidney Dis. 1997; 30(2):204-12↩
Curtin RB, Lowrie EG, DeOreo PB. Self-reported functional status: an important predictor of health outcomes among end-stage renal diseas patients. Adv Renal Replace Ther. 1999 Apr;6(2):133-40↩
Lowrie EG, Curtin RB, LePain N, Schatell D. Medical outcomes study short form-36: a consistent and powerful predictor of morbidity and mortality in dialysis patients. Am J Kidney Dis. 2003 Jun;41(6):1286-92↩
Picciano RJ. Identifying the value of technology in fluid management. Nephrol News Issues. 2016;July:20-21.↩
Comments
Mary Beth Callahan, ACSW/LCSW
Aug 10, 2016 12:33 AM
Dori
Jul 22, 2016 1:41 PM
RJ Picciano
Jul 22, 2016 8:41 AM
Glenda Payne
Jul 21, 2016 11:32 PM
Lisa Hall
Jul 21, 2016 10:36 PM
John Agar
Jul 22, 2016 1:13 AM