U.S. Dialysis Measures – Have We Set Up the Ladder Against the Wrong Wall?

This blog post was made by Dori Schatell, MS, Executive Director, Medical Education Institute on May 30th, 2014.
U.S. Dialysis Measures – Have We Set Up the Ladder Against the Wrong Wall?

Two or three years ago at the Annual Dialysis Conference, I was lucky enough to hear thought leader nephrologist Tom Parker III speak on U.S. dialysis measures and clinical practice guidelines. Since the non-profit Medical Education Institute developed the first set of DOQI guidelines in the mid 1990s before they were given over to the National Kidney Foundation—and I helped design the workgroup structure and staffed the Anemia work group—his spot-on points truly made me cringe.

Two leading causes of death on dialysis in the US are sudden cardiac death and infection, and there is no clinical practice guideline for either one, Dr. Parker noted in his talk.

Truth!

The guidelines at that point focused on:

  • Anemia (since Amgen was paying)
  • Hemodialysis adequacy (since the RPA had recently done a guideline in this area, and politically it was imperative to include this)
  • PD adequacy (to be parallel to HD adequacy)
  • Bone disease (because we had recently done some work in this area)

At no time was there ever a conversation that started out, "what are the leading causes of preventable death in dialysis, and how can we address those?"

The truly appalling and terrifying thing is—13 years later, this conversation did finally occur (in the form of the well-publicized ESRD: State of the Art and Charting the Challenges for the Future conference held at Harvard in 2009, with Dr. Parker and a star-studded cast of U.S. nephrology experts. Boy, I wish I'd known about that conference at the time...)—but CMS is still stuck in the rut of the KDOQI and KDIGO guidelines, which have been solidified into stone, written into regulation, and still miss the point entirely about how best to improve dialysis outcomes. To me, this is a classic example of setting up a ladder against the wrong wall. We are measuring the wrong things, and missing the right ones.

In an article entitled Dialysis at a Crossroads: 50 Years Later,1 Dr. Parker, Dr. Ray Hakim, Dr. Allen Nissenson, Dr. Ted Steinman, and Dr. Richard Glassock recommend a sea change in our measures focus for dialysis, aligned with what really does matter for helping patients to live longer and better:

  • Timely (not early) dialysis start
  • Mindful management of the first 3-4 months of dialysis
  • HD catheter avoidance
  • Extracellular fluid volume control all the time (not just during treatments)
  • Longer or more frequent sessions
  • "Mind the left ventricle"
  • Moderation in prescribed ESAs, iron, vitamin D, binders, and calcimimetic drugs
  • Infection control
  • Limiting only salt in the diet
  • So, how can we get to the RIGHT measures? The ones that really do make a difference to quality of life and survival? I have two thoughts:

    1. While each of the clinical performance measures (CPMs) individually has some merit, they are powerful predictors of survival when combined together! Rocco et al2 looked at adequacy (Kt/V≥1.2), anemia (hemoglobin ≥11.0 g/dL), fistula for vascular access, and albumin (≥4.0 g/dL or ≥3.7 g/dL bromcresol green or bromcresol purple lab methods, respectively) among 15,287 individuals on hemodialysis:

      • 6% met none of the four CPM targets—and 12 month mortality was 29%
      • 24% met one target—and 12 month mortality was 25%
      • 39% met two targets—and 12 month mortality was 21%
      • 24% met three targets—and 12 month mortality was 14%
      • 7% met all four targets—and 12 month mortality was 7%

      Dialysis clinics could change their lab "report cards" to share this information with consumers, so everyone can see at a glance how many measures each person is on target for, and act to improve the "score" and each patient's chance of survival.

      Mendelssohn et al3 did a similar analysis of 6,664 individuals receiving care at DOPPS-enrolled clinics in seven countries. They looked at the facility level at what percentage of consumers met targets for Kt/V, hemoglobin, albumin, and catheter use, with similar findings, calling it the Practice Risk Score (PRS). For each 0.1% rise in the PRS, the relative risk of death increased by 5%, and these results were highly significant. A tool could be built to help clinics calculate their PRS—and this figure could be submitted to the National Quality Forum (NQF) as a clinical performance measure that would matter, and that CMS could adopt.

    2. Speaking of the NQF, I would like to call on the leadership of the Dialysis at a Crossroads conference to use their corporate resources to turn their suggested list into measures and submit them. Let's move from data and excellent rhetoric to action! Let's change the world for dialysis patients! It's not enough to do research and talk about it. We need to move it into practice.

    A quote attributed (rightly or wrongly) to Albert Einstein says, "Not everything that can be counted counts, and not everything that counts can be counted." In the case of dialysis, we are still doing too much that doesn't count, and not enough that does. But, we can change that. And, we need to.

    1. Parker T, Hakim R, Nissenson AR, Steinman T, Glassock RJ. Dialysis at a crossroads: 50 years later. Clin J Am Soc Nephrol. 2011. 6:457-61
    2. Rocco MV, Frankenfield DL, Hopson SD, McClellan WM. Relationship between clinical performance measures and outcomes among patients receiving long-term hemodialysis. Annals Int Med. 2006;145:512-19
    3. Mendelssohn DC, Pisoni RL, Arrington CJ, Yeates KE, Leblanc M, Deziel C, Akiba T, Krishnan M, Fukuhara S, Lamiere N, Port FK, Wolfe RA. A practice-related risk score (PRS): a DOPPS-derived aggregate quality index for haemodialysis facilities. Nephrol Dial Transplant. 2008 Oct;23(10):3227-33

    Comments

    • Julie Williams

      Jun 9, 9:58 AM

      I absolutely agree 100% with the recommendations of those amazing Nephrology leaders. But we have a bigger obstacle than CMS and that is the practicing Nephrologist in our clinic. I am not faulting them and I completely understand their pushback when we "non-Nephrologists" try to get them to change what they are comfortable with. They are so enormously busy that to even consider something that might even be a small change to their current practice throws an enormous wrench into their time management. We need to come up with practical ways, backed up by statistics, to convince our Nephrologists that it is worth the "pain" to change. We need to develop tools so they can see positive feedback by implementing these changes and positive feedback that their efforts did improve the care they provide.

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    • Tom Parker

      Jun 9, 9:24 AM

      Dori:

      Love you article. Provocative and accurate.

      We will do our part.

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    • paul laboi

      May 30, 6:13 PM

      I am a nephrologist based in York, UK. I found your article very interesting because I have often thought, are we really measuring the things that matter.
      We are involved in an exciting program with our patient partners, whereby patients choose to learn as many or few dialysis tasks in the dialysis units. This structured programme converts nurses from being providers of care to supporters and educators, assisting and enabling patients to take on an active role. This is a young program (http://www.shareddialysis-care.org.uk/) and we are due to host a national learning event. One of the discussions we will have in our event is about the right measurements. I have set up an online discussion board(http://www.shareddialysis-care.org.uk/discussions) to inform, discuss and disseminate views/information. With your permission, I would like to feature a link on your article on our site. Please do visit our site and let me know if it is ok.
      Kind regards
      Paul

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      • Dori Schatell

        Jun 4, 3:11 PM

        Hi Paul,
        How exciting! Of course you can link to this blog post--and anything else on Home Dialysis Central that will help you to empower your patients and involve them in their own care. At the non-profit MEI (which runs this site), our mission is to "help people with chronic disease learn to manage and improve their health." Our focus is CKD, and we ground all of our materials in Self-determination Theory, write them at the 6th grade reading level, and support the Chronic Care Model. Our approach tends to be a better fit for the UK than for the US. ;-) One aspect of CKD care that has not yet been fully maximized in either location is fully engaging people in their own care. I hope your project is a huge success, and please let us know how else we can help!

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    • Dori

      May 30, 3:44 PM

      You totally GET it, Gale. So much of this is about simple mindfulness, and paying attention to the things that matter--vs. getting distracted by a lot of little things that really don't.

      And, home therapies SHOULD become the default. We would never expect people with diabetes to come into a clinic several times a day to get their insulin. We teach them how to manage their complex chronic disease. We can teach our folks, too.

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    • Gale Schulke

      May 30, 3:34 PM

      I totally agree with this. We are not doing enough to prevent cardiac disease in our pts. As nurses, we pay for more attention to albumins than the officials do. We know the risks in having low albumin and have seen people die because of it. Prevention is key in dialysis. If we can PREVENT infection, PREVENT cardiac issues; PREVENT fluid overloads, people would benefit more from dialysis. We encourage people to do home dialysis, either PD or HHD as the preferred method because we know they get better dialysis. Medicare and MediCal and all those govt supported programs should mandate that home modalities be ruled out first, not ruled in later.

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