The Annual Dialysis Conference: Seattle 2010 - A Day of Hope

By Peter Laird, MD

I met Bill at the top of the escalator minutes before the morning session opened with my conference pass that Dori Schatell of the Medical Education Institute and Home Dialysis Central made available to me for today.  The Annual Dialysis Conference is one of the best organized conferences that I have been to and they stayed precisely on time the entire day which is no small accomplishment with doctors that usually like to hear the sound of their own voice of which I am quite guilty as charged as well. 

We started the morning session with a report on why the American experience with fistulas remains quite low compared to the the majority of westernized and developed nations. Although there are many factors that are important, one stood out to me from the lecture, that of the disparity of cases that vascular surgeons perform during their training.  I reported on this issue last year in a post called Fistula First? American surgeons are still last

In a recent article listed by DOPPS, one potential reason for our continued last place fistula placement rate may be directly related to the lack of emphasis that vascular surgery training programs place on fistula procedures:

During training, US surgeons created fewer fistulae (US mean = 16 vs. 39-426 in other countries) and noted less emphasis on vascular access placement compared with surgeons elsewhere.(Download slide presentation)

It is my opinion that until America’s surgeons put Fistula First into practice during their vascular surgery training, America will fail to recover the preeminence we once held as the leading innovator of dialysis access practices.  The progress to date in improving our fistula placement statistics should not lead us to become complacent with this initial success. America still needs to seek an even higher level of achievement starting first with our vascular surgery training programs.

Bill and I then sat in later in the morning on the updates of the Frequent Hemodialysis Network short daily and nocturnal studies.  However, it was the biggest disappointment of the morning for me since they did not go into any of the preliminary results which I had mistakingly expected to see. (see comments below by Dr. John Daugirdas. Corrections made based on his comments)

The most interesting aspect of the frequent hemodialysis update is actually that of the NxStage FREEDOM study which has nearly completed all of its enrollment of 500 patients.  I have personally looked at increasing the dosage of NxStage to maximize the efficiency of this very portable machine, but the recommended dosage of spKt/V of 0.5 with a weekly sdKt/V of 2.0-2.2 which is comparable to conventional incenter hemodialysis weekly dosages may actually give us some of the most interesting data to date in quotidian dialysis studies since the total dosage of both modalities is similar, but the only real difference is in that of the frequency of treatments.  After this presentation, I am now most eager to hear the results of the FREEDOM study since this will look directly at the factor of frequency in the dialysis equation. 

Lastly, it was a day of meeting many of the people that have influenced my education on dialysis related issues.  After joining Bill this morning, I met Gary Peterson of RenalWeb in the opening session, as well as Joyce Jackson of the NKC, and Jim Curtis of Home Dialysis Plus who are developing a new portable dialysis machine. I then saw Dr. Christopher Blagg meeting him in person for the first time briefly in the hallway, and then I met Denise Eilers after the frequent dialysis talk as well as Mark Neumann of NephrOnline and NNI.  Bill then introduced me to Dr. Carl Kjellstrand who developed the "unphysiology" theory of dialysis in the 1970's. Likewise, Rich Berkowitz of NxStageUsers then introduced me to several NxStage management including Joe Turk. 

I was able to discuss my own personal goals for home dialysis and how the NxStage is meeting them today. Joe Turk discussed some of their goals and directions for future improvements of their portable home dialysis machine.  I later met Nancy Spaeth before the end of the day.  Learning her story of surviving renal disease since the 1960's and seeing her energy in person was perhaps the most inspiring of the many inspirational and devoted people I met throughout the day.  It is her story that is the real story of renal replacement options in America.

It was an amazing day of discussions, information, making friendships and keeping the raison d'etre focussed on the real issue of optimal dialysis for all Americans. It is a conference that all renal professionals and patients should attend.  I am looking at the next meeting in Phoenix already. There remains much work to be completed and mindsets to be changed.  The time has come for optimal dialysis and it is before us as never before.  If anyone has lost hope while on dialysis, I would highly recommend simply looking at the work of the individuals listed above and know that there is much to hope for.  Perhaps I will actually be able to meet Dori Schatell in person the next time if not sooner at another meeting.

I took my wife to Morton's Steakhouse after the conference and met Darren whose father has been on dialysis for about five years.  He told me his father struggled with dialysis and often didn't feel well. Yet it doesn't have to be that way with the many talented people working to bring about practical options that are available widely in many other parts of the world.  There is much that a dialysis patient must do for themselves, but some of these optimal dialysis options make patient compliance a much easier chore than conventional incenter  gives in most instances.  Seeing Nancy Spaeth going up into the Space Needle with Denise Eilers as we were coming down to go home to bed shows what over forty years of self advocacy can do for a renal patient.  As Lori Hartwell says so eloquently, "an illness is too demanding when you don't have hope." There was much hope in what I saw today at the ADC.

Thank you Dori once again for making today possible.

Comments

[M3Riddler]

Unfortunately, I have to agree that "American Surgeons are Still Last" as posted above. There are some exceptions to this. I am finding this out for myself. I have been to 3 different surgeons regarding my fistula for revision or creation of new fistula. All three surgeons have very different ideas on how to revise. Two out of the three wanted to just throw a graft in. After researching myself and asking questions it appears there are now "other" options than suddenly are now available than a graft. Why coudln't they suggest this without educating myself on the topic. As I have always stated, the more you know, the more the docs are willing to openly tell you.
There needs to be more research on the topic of Fistulas in the United States. They have been using fistulas for many years and there is little advancement in my opinion...

[Miriam Lippel Blum]

Peter,

Thanks for your report and perspectives on the the conference proceedings. While there is so far for the US to go in regard to dialysis, it is good to have hope. I hope that we'll be able to meet when the conference is in Phoenix since I am so close I will just have to make the trip.

Best wishes always,
Miriam

[somerville]

I love the 1984ish 'doublethink' in the phrase, 'NxStage Freedom.' Where is the freedom in having your home invaded by the Sisyphean duty to undergo an elaborate medical process six days out of seven forever just to stay alive? Every unreasonable tyranny always seeks to disguise what it is doing by adopting the exact opposite name for its institutions from what they actually deserve, such as the French Revolution's 'Committee of Public Safety' which executed thousands for no gain in public security.

[Peter Laird, MD]

The NxStage System One study is quite appropriately named in that I have FREEDOM from nurses who refuse to follow basic hand washing standards, it gives me FREEDOM to set my own schedule, it gives me FREEDOM to choose what chair to sit in, it gives me FREEDOM to set my own ambient temperature, it gives me FREEDOM to eat and drink whatever I want on dialysis, it gives me FREEDOM to exercise my right to health care related privacy, it gives me FREEDOM to choose my own health care treatments, it gives me FREEDOM to exercise patient related health autonomy. I would say it has an appropriate name indeed.

[John Daugirdas]

Dear Peter,

I always enjoy reading your thoughtful comments, but here you were a bit off-base in 2 areas:

1) You wrote:
"The FREEDOM study may be one of the first to dramatically validate Dr. Scribner's hemodialysis product (pdf link) which gives much more weight to frequency than to duration of dialysis."

Actually, the hemodialysis product (HDP) is not that different from the standard Kt/V as recommended by KDOQI 2006. For an example, see:

http://ureakinetics.org/files/hdp_vs_stdktv.pdf

where I modeled the same treatments as in the Scribner/Oreopoulos paper (D&T 2002) and calculated the approximate standard Kt/V values and then plotted the hemodialysis product (HDP) against std_Kt/V. As you can see from the plot, the relative values of HDP and standard Kt/V with the various more frequent and extended session length schedules are quite similar.

2) You also wrote:
"In addition, in juxtaposition to the FHN closed mouth investigators, the FREEDOM study has already published several aspects of their interim results and has two more announcements tomorrow in the Monday morning sessions of the ADC. Have we lost the love of research that money talks more than disseminating preliminary results in meetings such as this as in times past?"

None of the results of the FHN trial are in yet. Patients are still running on the trial, with an expected end date in Spring of 2010 (very soon now!). In a double-blind trial, interim analyses are never released to the study investigators until the trial is completely finished to avoid the risk of biasing the investigators. In contrast, in an observational or unblinded randomized trial, preliminary results often are made available.

So your statement about "money talks" as a reason for not disseminating results of FHN is not relevant. Hopefully the primary analyses of the FHN studies will be ready for presentation at ASN in 2010, assuming that we can finish up the data analysis in time for the abstract deadline.

With best regards,

John Daugirdas, MD

[John Daugirdas]

Ok, I misspoke :-). The FHN is not, of course, a blinded study. But the principle is the same. If preliminary trends in data are released to the investigators while they have still not finished collecting the data on all patients, there is a risk of biasing the data not yet collected.

JTD

[Peter Laird, MD]

Dear John,

Thank you for your thoughtful explanations on both the dialysis product and the release of preliminary information. First of all, I have modified my post and deleted some of my commentary on the issue of preliminary results that you found offensive. Forgive me for expressing my disappointment of the lack of data that I had looked forward to seeing during the ADC which I had mistakingly thought was the purpose of the update. Your explanation is quite reasonable and I have edited my post to hopefully reflect more accurately my own response at the session in question without undue reflection against anyone involved in the study.

Perhaps it was mentioned during their presentation on why no interim results were released and I missed it, but if not, that may be a good starting point for such a lecture in the future explaining why interim results might actually interfere with ongoing data collection to those of us not involved in the research world.

Secondly, thank you for the graph that you put together which really does validate the hemodialysis product as a secondary method of calculating the adequacy of dialysis. The correlation between the two methods is quite astounding really. It may be useful to use that graph in future posts should the issue come up again in another post if you will grant your permission to do so with appropriate credits.

Thank you once again for your thoughtful correction of those points in my post.

Most sincerely,

Peter Laird, MD