Better Dialysis is REAL Renal Rehab
Almost 50 years ago, nephrology luminary Belding Scribner said: "If the treatment of chronic uremia cannot fully rehabilitate the patient, the treatment is inadequate.1" After 9 years of work on the Life Options Rehabilitation Program, I realized how very right he was. With Amgen support, for almost a decade the Medical Education Institute (MEI) had focused on the Life Options "Five E's" (Encouragement, Education, Exercise, Employment, and Evaluation) and trying to get clinics to start active exercise programs* and offer in-center shifts in the evenings so people could work.** We held contests for the best rehab programs, conducted research studies, advocated for policy change, and wrote articles and newsletters and patient and professional education pieces (most of which—and newer ones besides—are still available at lifeoptions.org).
Then, in 2000, the year I took over as Executive Director of the MEI, Dr. Andreas Pierratos spoke to a packed room at the ASN meeting in Toronto about the Humber River, Ontario nocturnal home hemo program. Revelation! In the video clips he shared, people were active, engaged in the world, sleeping well, reporting satisfying sex lives, working. They didn't need blood pressure pills or binders—some needed phosphate supplements. This wasn't "adequate" dialysis, it was optimal. And, the natural outcome was rehabilitation—without special programs for exercise or employment.
Seeing Dr. Pierratos' presentation shifted my entire rehab paradigm. Better clinical and rehab outcomes are all about better dialysis inputs. Given the choice between devoting a lot of staff time to rehab programming vs. offering as many patients as possible longer and/or more frequent dialysis (PD or HD), my vote's for better dialysis. Can we do both? Sure—with unlimited time and dollars. Unfortunately, clinics don't have those luxuries.
Should Congress and CMS focus on employment as the measure of dialysis effectiveness? Enabling rehab—and creating tax-paying citizens—was the original intent of the Medicare ESRD Program in 1972. But 40 years later, the median age of Americans on dialysis is 65—half are "working-age," but half are not. Most reach kidney failure due to type 2 diabetes and/or hypertension, both of which contribute to other comorbidities that may preclude work, and other health problems like arthritis make paid work impossible for some as well. And, some working-age people don't want to work (in which case it helps to have a good disability insurance policy that pays more than Social Security Disability!). In the general population, only about 2/3 of working-age people work for pay. Why should we expect employment even of all working-age people on dialysis? (See Peter Laird's Hemodoc blog for a nice summary of the data on this – www.hemodoc.com/2012/05/should-we-base-dialysis-outcomes-on-employment-rates.html)
Instead of putting all of our eggs in an employment basket, we could advocate for a rehab metric that can be equally applied to people on dialysis of all ages and abilities. And, we have one: the KDQOL-36 (a 36-item paper-and-pencil survey developed by researchers at RAND).2 It assesses how patients' perceive their own mental health, physical health, and the degree to which they are burdened by their illness—their health-related quality of life (HRQOL). HRQOL scores predict hospitalization and survival in people on dialysis as strongly as serum albumin3—and CMS already requires clinics to offer this survey to most adult patients each year and use the results in patient care plans. If we improve HRQOL, such as through more dialysis4,5 and helping patients keep their jobs6, we will reduce hospital stays and save lives—and help people to feel well enough to pursue their own rehab goals of choice.
* Exercise programs do help people on dialysis to improve their physical and mental functioning7,8, and evening shifts do help more people keep their jobs!
- In presentation by Christopher R. Blagg, MD. The Early History of Dialysis and What We Have Learned that Could be Helpful in Developing Countries. Beijing, China, September 2011. http://www.aishen.org/files/K-2-3.pdf
- Hays RD, Kallich JD, Mapes DL, Coons SJ, Carter WB. Development of the kidney disease quality of life (KDQOL™) instrument. Qual Life Res. 1994. 3:329-338.
- Mapes DL, Lopes AA, Satayathum S, McCullough KP, Goodkin DA, Locatelli F, Fukuhara S, Young EW, Kurokawa K, Saito A, Bommer J, Wolfe RA, Held PJ, Port FK. Health-related quality of life as a predictor of mortality and hospitalization: The Dialysis Outcomes and Practice Patterns Study (DOPPS). Kidney Int. 2003. 64:339-349
- Heidenheim AP, Muirhead N, Moist L, Lindsay RM. Patient quality of life on quotidian hemodialysis. Am J Kidney Dis. 2003. 42(1 Suppl):36-41
- Ting GO, Kjellstrand C, Freitas T, Carrie BJ, Zarghamee S. Long-term study of high-comorbidity ESRD patients converted from conventional to short daily hemodialysis. Am J Kidney Dis. 2003. 42 (5):1020-1035
- Lopes AA, Bragg-Gresham JL, Goodkin DA, Fukuhara S, Mapes DL, Young EW, Gillespie BW, Azikawa T, Greenwood RN, Andreucci VE, Akiba T, Held PJ, Port FK. Factors associated with health-related quality of life among hemodialysis patients in the DOPPS. Qual Life Res. 2007. 16(4):545-57
- Levendoglu F, Altintepe L, Okudan N, Ugurlu H, Gokbel H, Tonbul Z, Guney I, Turk S. A twelve week exercise program improves the psychological status, quality of life and work capacity in hemodialysis patients. J Nephrol. 2004. 17(6):826-832
- Painter P, Moore G, Carlson L, Paul S, Myll J, Phillips W, Haskell W. Effects of exercise training plus normalization of hematocrit on exercise capacity and health-related quality of life. Am J Kidney Dis, 2002. 39 (2), 257-265
- Kutner N, Bowles T, Zhang R, Huang Y, Pastan S. Dialysis facility characteristics and variation in employment rates: a national study. Clin J Am Soc Nephrol. 2008. 3:111-16