Happy World Kidney Day 2011!
This years theme is-
protect your kidneys, save your heart.
World Kidney Day began in 2006 and has continued to grow each year. While every other organ system/disease has had a day/month for quite some time, it took a while to add our favorite organ (the kidney) to this list. Here are the last 5 themes for world kidney day.
This years theme is-
protect your kidneys, save your heart.
World Kidney Day began in 2006 and has continued to grow each year. While every other organ system/disease has had a day/month for quite some time, it took a while to add our favorite organ (the kidney) to this list. Here are the last 5 themes for world kidney day.
2006 Are your kidneys OK?
2007 Common, harmful and treatable
2008 Amazing kidneys
2009 Protect your kidneys: Keep your pressure down
This years theme is fitting because chronic kidney disease (CKD) alone has been established as an independent risk factor for cardiovascular disease (CVD). A nice editorial from ISN/International Federation of Kidney Foundations World Kidney Day Committee is published online for free here outlines the lack of attention CKD is given by world governments and public health authorities. This day helps give much needed attention to CKD and hopefully will lead to more awareness and eventually more therapies. Increased recognition of CKD will hopefully lead to more aggressive therapies for blood sugar, blood pressure and cholesterol. Which will in turn will lead to few patients developing CVD and ESRD.
What else can World Kidney Day do? We have long recognized the 20- to 30-fold increase in CVD in patients with ESRD. Much attention has been given to ESRD care. However, we have done little to impact cardiovascular mortality in patients with ESRD. Again, World Kidney Day can help give more attention to this growing problem as well. Expanding home dialysis options (daily home hemo and peritoneal dialysis) for patients on hemodialysis. This will need to be tackled on many fronts 1. Physician training and acceptance 2. Increasing infrastructure at dialysis units to deal with patient training and call system for issues related to nocturnal dialysis 3. Educating the public to know that this option can be performed safely and effectively. 4. Improving reimbursement programs to allow providers to utilize these options.
Some of the fellows at Duke will be volunteering at the Raleigh NKF KEEP program this weekend to celebrate World Kidney Day. Lets spread that word about kidney disease so we can reverse this growing epidemic!
I'm all for more, better dialysis and am disappointed in all of you neph fellows for not advancing the cause of home hemo and, especially, nocturnal/extended home hemo. Do any of you really, honestly believe that standard ICHD is the best modality for all of your patients? Is that what you would choose for yourself? Better dialysis means less CVD. Do us all a favor and do more to promote optimal dialysis, not just "adequate" dialysis. What's the point of having life-saving treatment if, in the long run, it just ends up damaging your body? Surely no physician sees the sense in this!
ReplyDeleteMichelle,
ReplyDeleteThank you for your comments.
Keep pushing us.
The Renal Fellow Network is a collection of some of the finest rising nephrologists in the country. We are not content with leaving outcomes and care processes in their current state.
Keep talking to us. Tell us where we are falling short. We will do better.
I totally agree with Michelle. The FHN study has shown what patients and their care partners have known all along--more dialysis is better. The lesson is this: it is vital to consider what patients say about their quality of life with optimal dialysis. Kt/v is less important than a patient's ability to live the life they wish to live.
ReplyDeleteWhy are professionals in the kidney community espousing a treatment (<4hrs/3x per week) that few or none would choose for themselves? Personally, I would opt for every other day nocturnal and I am not afraid to say so.
Most nephs today are simply not used to dealing with thriving dialysis patients. Sadly, disability has become commonly accepted, but working, rehabilitated patients used to be the norm. As a community, we need to get back to the well patient mindset--sooner, not later.
BTW: I am a nurse, but I was also my late husband's HHD care partner for 25 years. From first hand experience, I know that a normal life and dialysis CAN coexist.
And yes, we will all keep pushing you. But better yet, we need to work respectfully with each other to make sure patient centered care and shared decision making becomes reality.
Graham, I know that RFN is the hotspot for the finest rising nephs, and that is precisely why it is important that you elevate dialysis from the gutter of nephrology education. You are the future. You are MY future. Judging by what I've read on this blog, dialysis doesn't get much of a look in. In fact, "dialysis" seems to be synonymous with that wretched thrice weekly regimen. Dialysis is the hard work; it's what happens when the fancy footwork can't save the patient from ESRD. ICHD is doom. Your challenge is to change the thinking in dialysis circles, to study, understand and advocate for optimal dialysis and dump "adequate" dialysis into the annals of ancient history along with the dinosaur.
ReplyDeleteI take issue somewhat with the idea that this is all the fault of the nephrologists. Getting patients to stay on for 4 hours 3 times weekly is challenging enough. There are resource issues surrounding this also - there are many places where 3 hours is the standard dialysis time because there are too many patients and too little resources to provide adequate dialysis. I have come across a number of patients on home hemo and in general they have done well. However, the majority of our patients these days are elderly and frail and are not necessarily suitable for home dialysis. Similarly, there are compliance issues, if a patient is motivated and reliable, then home hemo could be ideal but this is not always the case.
ReplyDeleteThat said, I welcome your comments and agree that we could all be doing better. This can only benefit patients and families in the long term.
Gearoid, I certainly understand that home dialysis is not for everyone, but it does sadden me that optimal dialysis is not available in clinics. If I were to ask you why patients do not routinely have access to SDD or NHD in a clinic setting, I'm sure you'd reply that there isn't enough money to do that. I'd then ask you to look at how much money the top execs of DaVita made last year and how much of their stock they just sold. The money is there; it's just not being spent in a way that benefits patients AND staff.
ReplyDeleteThe issue isn't whether or not dialysis should be done at home. The issue is that home seems to be the ONLY place where optimal dialysis is available.
Surely the more elderly patients, particularly those with cardiac issues, would benefit from treatment that is not so violent.
Compliance is certainly a bugbear. No one wants to be hooked up to a machine longer than absolutely necessary. But if a patient was at least given all of the pertinent information, people could make an informed choice. If some extra time on the machine means a less restrictive diet, fewer fluid restrictions (Oh, to have just a nice icy glass of water!), better BP maintenance and better maintenance of just about everything (particularly PO), you may be surprised by how many people would choose that extra time. At least give people the information.
This is NOT all the fault of nephrologist, but the nephrologist is usually the first line of defense between the patient and the disability caused by standard dialysis practice. If a patient is too ill for optimal dialysis, then perhaps that patient shouldn't be on dialysis at all. Dialysis is torture for many very ill and elderly dialysis patients; it is extremely burdensome, and of course the nephrologist has to be careful to not just bung a patient on D just because he can.
I am not posting just to criticize. My own neph has given me outstanding pre-dialysis care and is very amenable to my desire to do extended HHD. But other nephs seem to ignore the evidence at hand and refuse to adequately educate their patients. A patient should not have to rely purely on the luck of the draw and hope they get a good neph. We are looking to all you...the new generation of nephs...to allow us to have a voice and a choice in our treatment.
Thank you all very much for the opportunity to post here. I have faith in you!
I take issue somewhat with the idea that American patients are so much less compliant than their European or Japanese counterparts that this can explain away the vast disparity in outcomes.
ReplyDeleteSo how exactly is the Japanese on average so much *more* compliant that mortality can be from 2.5 to 4 times lower? The idea that they only put healthier people on HD in these countries, even when controlled for, *still* cannot account for even a fraction of the disparity. Nor, can it account for worsening outcomes *within* the US. So, the American patient has somehow become progressively LESS compliant over time?
Anyway, it's not about whose "fault" it is. There is a responsibility now to change. The physician has the greater responsibility because he or she is in better position from which to actually do something --than can be accomplished by an often very ill patient.
Let's face it...dialysis in the US is a business that makes a LOT of money for a few people.
ReplyDeleteWe could learn a lot from how other countries approach dialysis. There is no need for the US to have outcomes as if we're a third world nation. At the very least, we should require that the water used in clinics comply to a much higher standard akin to that used in Europe. Everyone knows that the weekend without treatment is so risky...that so many more cardiac events occur on that first Monday/Tuesday after the weekend. Why not have every other day D? Because there is not enough money? How much did the CEO of Davita make last year?
Is there a single neph fellow on this blog who would choose standard ICHD for him/herself? If so, why?
@Michelle, @Denise, @Anon- Thanks for your comments. As Graham said, we at RFN are dedicated to advancing the field of Nephrology. Changing the culture of dialysis in the US will take time. I do agree that we have not had many posts regarding quotidian HD, but we are aware of this and will make a concerted effort to keep this topic in the rota. The only agenda we have is to keep RFN as an educational tool for Nephrology fellows to learn and share knowledge. Again, thanks for the comments. @Graham, @Gearoid, lets keep up the good work.
ReplyDeleteAs soon as you start making excuses about how it "takes time" to change "the culture" you have shifted responsibility away from the prescribing physician onto a faceless entity you name "the culture." Then it somehow becomes somebody else's responsibility so you can just shrug it off.
ReplyDelete"Culture" is an emergent property of the constituent members, i.e. YOU. You ARE the culture. If YOU change, the culture changes along with you. Starting today.
I think Michelle's question deserves an answer. RFN truly is the hope for the future, but not if the next generation is unable to face this issue with bravery and honesty.
@Matt,if it is true that RFN is an educational tool with which fellows can learn and share knowledge, then I am certain that you would take advantage of any source of knowledge...like patients. Our lives are not just some academic exercise.
ReplyDeleteOn the flip side, I read this blog every day because even though I am not a neph fellow, I, too, like to share knowledge. It is not too absurd to think that I could learn from you, a group of nephrology fellows, and you could learn from me, a 20 year vet of the CKD wars.
Anonymous makes a good point...you ARE the culture. Your patients are generally too ill and/or too traumatized, and dialysis providers are profit driven. That leaves YOU at the forefront.
"The Culture" was created by Dr. Lowry back in the early 70's, so we've had 40 years of merely "adequate" dialysis forced upon us. Do we need another 40 years?
We all look forward to the advances in thinking that this new generation of neph fellows will surely engender. RFN is a very respected and well read blog among patients and other inhabitants of the renal community. We are grateful for any attempt you make at restoring patient-driven therapy to its rightful state as the highest priority.
@Anon, @Michelle I by no means am making excuses. Let me clarify my views.
ReplyDeleteFirst, My original article highlighted several areas where we can improve this issue. "1. Physician training and acceptance" is listed as number 1. This is by no means a comprehensive or complete list.
Second, I agree that we can take the lead in this issue and can assure you as Graham stated "We are not content with leaving outcomes and care processes in their current state".
Finally, We can learn from everyone on this site and welcome comment from all. To answer Michelle's question- Yes, if I had to choose a form a RRT, I would likely choose home hemo or PD. This has been examined in an article (http://www.ncbi.nlm.nih.gov/pubmed/20942330).
Again, thanks for the comments. Keep them coming
Matt, thank you for being honest. You haven't *fully* answered Michelle's question, but I fully expect your other RFN colleagues' responses will be similar to those in the study you referenced if you take the time to ask them (which you should).
ReplyDelete(For the readers, here is the full text of the study Dr. Sparks mentioned:)
http://www.satellitehealth.com/pdf/SHC_362_Dr_Schiller_article_Rev.pdf
1. Of MDs surveyed 93% chose HHD or PD
2. Over 50% of MDs chose HHD, either daily or nightly.
3. "BETTER OUTCOMES" was the number one reason cited for these preferences, followed by flexibility.
The reason Michelle and other HHD advocates get rather "indignant" is because there really is something WRONG with on the one hand telling your patients that there is "insufficient evidence" - when one's personal beliefs are so contrary. (Granted, the Schiller study was not a "random" sampling, so would suffer from "those willing to take the time to answer an online survey" bias -but it is just the latest.
Patients should not have to worry about the "luck of the draw" in order to find a "good neph"-- yet they do, which touches upon a broader credibility problem within the profession. Currently, outcomes vary widely, and patients' lives are on the line, so it is a "big" decision.
Well informed, intelligent patients such as Michelle are common, and they WILL be aware of information such as Schiller's results.
Which gets at the true "elephant in the room" -- nephrology AS A WHOLE.
Nephrology stands largely alone within all internal medicine specialties for its prolonged failure to substantially improve outcomes, only recently starting to change.
The comparative lack of RCT's, (and "interventional" RCT's in particular) has been documented, ranking near the bottom--but really can't explain the situation. It is not just a matter of inadequate research funding. Despite lingering "unknowns," "big questions" and "partially understoods" - we now know ENOUGH to do far better, yet still *generally* fail to apply what is already known. The "best" outcomes are a standard to which ALL should live up to.
"Physician training and acceptance" has two facets: 1. Understanding (or "believing," or "admitting") how better outcomes can be achieved. 2. Accepting personal responsibility for doing so. (Do more nephrologists need the "Yoda" speech as part of their training?)
Given funding and research realities, waiting for better therapies to "emerge" is no excuse for not more fully using the tools you do have. But where dramatically better outcomes have been demonstrated, has required comprehensive coordinated care, and *individualized* treatment-to-result, rather than *standardized* treatment-as-process. This is challenging, costly, and poorly compensated---which arguably does more to explain failure to improve CKD outcomes than lacking science. Still, it is the right thing to do.
Really, the intent is not to give you or Graham or anyone else at RFN a hard time. (What RFN is doing is admirable and IMPORTANT, and your idealism is refreshing). But I also commend Michelle and others like her for holding your feet to the fire.
Yes, RFN's primary purpose is "education" not advocacy, but I too sometimes wonder if RFN has subtly shied away from the topic of quotidian dialysis just to avoid such controversy. Do keep your promise regarding "a more concerted effort" to adequately address this topic. (FHN was voted as one of the top stories of 2010, yet "FHN" occurs in only two subsequent posts, both of which were only glancingly connected to FHN or its implications.) Five months since such a landmark study was published, yet so little to say?
RFN is the future, because millions of lives are on the line, including Michelle's. As Dr. Abra stated, you will do better. You must.
We just surveyed nephrology professionals and our results also indicate what Michelle is point out to and a very going point. Everyone chose PD or nocturnal HD. Preliminary results suggest that 51.2% of health care professionals chose PD to be their choice of therapy. Among those who chose HD 87% chose one of Home HD modality. We are presenting this data at NKF soon with more details to follow.
ReplyDeleteI agree, we as budding nephrologists should focus more on dialysis and try to change the thinking and move forward with this
Like Michelle, I was not criticizing all nephrologists, but making the point that the attitude of the community needs to change.
ReplyDeleteEvery professional I queried at the ADC admitted that they would choose home and/or extended dialysis.
Nephrology fellows need to be thoroughly educated in all treatment modalities. Just the fact that this blog is willing to talk about needed changes and to listen to the patient/care partner perspective is a beginning step.
Regarding "non compliant" patients. Many times, those same patients who chafe at the restrictions of center dialysis do marvelously well when given the freedom of home modalities. And...while home therapy is not for everyone, many more patients could benefit from the normalcy of their home setting.
How about requiring fellows to visit a home patient in their own environment. That would be an educational experience par excellence.
It's about SOOO much more than labs! The vision should be a rehabilitated, thriving, patient who just happens to have kidney disease.
I would just like to refer the nephrologists to our website to read the California 2010 surveys. As patient advocates, we are shocked to see the number of deficiencies cited not only in infection prevention, but in other areas e.g. lack of following facility policies and procedures. Nephrologists, esp., those who are Medical Directors must, some way, be sure that staff are implementing correct/effective practices. This means ensuring that unit level supervision by charge RN, Facility Administrators, etc are doing their job. The surveys do, in reality, show day to day care.
ReplyDeleteOne of the most frequent complaints brought to our organization (from patients) is that their nephrologists 'must remain neutral' when there is a problem, 'can't get involved, between patient and staff' and similar statements. Additionally, it is our experience, from communications with patients/families who have experienced reprisal for speaking out to ensure correct care, that their nephrologist basically take the side of the staff for many reasons.... Can these problems be fixed? Patients, in many units, are fearful to speak up, very fearful, but deny such when asked. I know, in my heart, that this can be changed... more education and screening of staff with full understanding of what the patient experiences. Reprisal comes in all forms from a mere shrug of shoulders by staff when asked a question, to a patient being ignored when help is needed
Roberta Mikles BA RN
Director,Advocates4QualitySafePatientCare
www.qualitysafepatientcare.com
Going back to the original post, can some of you fellows explain what kind of training you get in dialysis overall and in home dialysis in particular? Do some "specialize" in dialysis? Are there sub-specialities in nephrology?
ReplyDeleteWith the rise of obesity, hypertension and diabetes, CKD seems ripe for epidemic growth, which means that cardiovascular disease will grow right up there with it. Why do you think there is so little attention paid to CKD as outlined Matt's original post? When you consider the cost of CKD to our nation's productivity and economic health, I am surprised that there is not more attention paid to this problem. Would you all consider a blog entry in this regard so you can discuss amongst yourselves a possible remedy for this lack of attention? Is the patient population generally too ill to advocate for itself?
Could you also perhaps consider a blog entry where you discuss how to educate your newly diagnosed CKD patient? This is one area where my own neph is found wanting; I've educated myself, but this is not ideal. Again in returning to the original post, I'd be very interested in reading a discussion between all of you where you share experiences regarding patient education, which is particularly important for renal patients.
Thank you!
Just my perspective -
ReplyDeleteFirst, I appreciate being able to check this site each week. It is very interesting and helpful.
As a recently transplanted patient (1/11) and previous PD patient, I can tell you my personal experiences here in San Diego.
After watching my mother suffer (and yes I mean suffer) through 20+ years of hemo dialysis and failed transplants, I was very stressed to know I had reached the point of needing dialysis. Dialysis as I knew it was not only a lifesaver but a lifetaker.
My neph told me about PD but I was skeptical. She then referred me to an "Options Class" where they discussed all the options we had as patients and all the "benefits" of each. This class was invaluable. I began PD a month or so later.
I do not believe you have to reinvent the wheel. The information is out there.
On PD, I had perfect labs from nearly the start. I do know this is not always the case as many patients are very sick or elderly. I do take care of myself and pay attention to lab results but for so many able-bodied people, they do not even have a choice of treatment. Wow - a "choice of treatment". When you get the news of impending dialysis, having an actual choice, would be awesome. Even slightly freeing.
Luckily my boyfriend was a match for a transplant and so far, everything is going very well. We are both very grateful to my nephrologist as well as the transplant team.
As is so often in life - education is the key. Educating the patient can make for a happy patient as well as a happy nephrologist.
Michelle
(a different Michelle than above)
Michelle, Thanks for your comments, I apologize for not answering sooner. Blogger self-categorized your post as spam and I did not notice until this until today. Very good questions. I outlined how dialysis education is done in an earlier post. (http://renalfellow.blogspot.com/2010/08/chronic-dialysis-exposure-during.html). Typically CKD is learned through a fellows weekly clinic which last 2 years in traditional fellowship and 3 years in a research fellowship. Peritoneal Dialysis is typically taught during the 6 month dialysis exposure plus a dedicated clinic. Fellows with interests in other modalities can spend time doing these as well. There are dialysis fellowship but these are rare. Also there is a vascultits/GN fellowship, Interventional fellowship, Transplant fellowship, Intensive Care fellowship. I agree, CKD education and why it is not given as much attention would make excellent posts. And, I would also agree that more outpatient exposure in Nephrology education is vital and should increase.
ReplyDelete