Recently, I had been wondering the # of patients on SDD and SND. Someone has problably previously posted this info, but here it is again from a recent article (Nov. 06’):
“About 350,000 people in the U.S. are on dialysis. Of that number, about 1,500 receive the treatment at home, and less than 200 undergo nightly home hemodialysis.”
As you can see, the # of patients on SDD is very small as compared to the total ESRD population, and the percentage on SND is REALLY small. I hadn’t realized that the # of home patients was this small. It seems really haywire that there is a tx available that can allow patients to feel SO much better in SO many ways, yet SO few know about it and have been asssited to train for it. Like Dori said, the majority of dialysis patients are actually in “institutionalized” care through in-center dialysis. The small grouping of patients who have made it into home txs are certainly the fortunate ones…
Articles aside, I’m not sure anyone really knows how many US dialyzors are using short daily or nocturnal home hemo. The only way to find this out is to ask each program how many patients they have and actually get a response. Even the USRDS doesn’t track which type of home hemo people are doing.
Since nocturnal doesn’t require special equipment and had a head start (it began in the US around 1999), you’d think it would better utilized than short daily–but the lack of special equipment also means that no company is especially pushing it. Plus, the focus of the early nocturnal programs on doing 6 nights a week (when Medicare only pays for 3) has slowed it down. In Tassin, France, nocturnal (or daytime) 8 hour/3x week treatments have been used for 30 years, with survival rates that are double those of the US.
Short daily home HD, on the other hand, has had 2 machines specially designed for it (Aksys & NxStage–which is now also being used for nocturnal), so there have been companies whose revenues depend on selling this therapy. That means PR efforts, legislative efforts, etc. This treatment started in the US around 2002-2003 (this is from memory, folks, so industry people can feel free to correct me) and is the fastest-growing option, based on numbers of new programs starting up.
We launched this site in July of 2004, specifically to encourage more use of all home therapies, and from what we can tell, they are growing. But there’s certainly a lot more room for further growth, so we’ll keep pushing!
Maerty, the story was in re to the NIH study on nocturnal dialysis. Lockridge has been offering nocturnal since late 90’s. Question is, why is the medical community so slow to offer the tx Lockrdge has been providing for many years now to the ESRD population? And they use a conventional machine in his program.
I have a gut feeling that there are alot more patients that can’t or don’t want to take on the responsibility of caring for themselves at home. The numbers are staggering and I remember from my last clinic that mostly all the patients on the floor didn’t look like great candidates for home dialysis, so I think those few of us do home dialysis are quite lucky to have the will to do it. However, is it all worth it? Regardless whether the numbers are small? I think so, its a matter of time till this trend is wholly accepted in a wide basis and perhaps the research study is also helping bring innovation in the treatment kidney disease…
It is interesting to observe the patients in our unit in their reactions to the home patients. They are very inquisitive and react to the home patients like they have escaped from a life of prison. They seem to think that they could not do the same, but are glad for the ones who go free. They have a look in their eyes of inferiority that they try not to show. It must be terrible for them to feel like going free is only for certain special patients who are more capable or who have the family support etc… In speaking with them, most told us they had no idea there was any such thing as home hemo. They ask how it’s done. It seems rather unfair that only those who have the ability to take the initiative to get into a home program get the better care while the majority don’t have what it takes to go free. Yet if better care was not based soley on one’s ability to take care of oneself due to personal capability and availabilty of family support, many more would have the opportunity.
As an advocate in my last clinic that I left the same results I had as you stated, simply most of the in-center patients think of us home patients as just too lucky to be able to do what we do, but they just nod and don’t show a desire of wanting that to. Of all the patients I spoke about home dialysis it was the fear about the needles, even by looking at the color of blood and needles, that’s what kept them from the desire of wanting home dialysis…
Dialysis type
Center hemodialysis - 307,122 (91.4%)
Center self hemodialysis - 193 (0.1%)
Home hemodialysis - 1,954 (0.6%)
CAPD - 10,858 (3.2%)
CCPD- 14,907 (4.4%)
Other PD - 60
Uncertain dialysis - 869 (0.3%)
All - 472,099 (100%)
Last week, Dori noticed that Table D.1 in previous USRDS reports has different numbers for home hemodialysis patients for prior years compared with what USRDS reports this year for the same prior years. For example, the 2005 Annual Data Report said 1,325 patients were on home hemo in 2003 up from 1,149 in 2002. The 2006 Annual Data Report said 1,930 patients were on home hemo in 2003, up from 1,779. Although a change of about 600 patients wouldn’t make much difference for in-center hemodialysis, this change reflects a 46% increase in the numbers on this therapy for the same year.
We don’t know if definitions changed or if someone reported data late causing the numbers to change. Dori emailed USRDS to find out why data changed this much since those of us who are trying to promote home therapies rely on past data remaining consistent from year to year to help us measure whether our efforts are paying off.
Nevertheless, look what a small percentage are doing home hemo, approx. 0.6%! This is minute when there is a tx that is so superior to 3x-incenter. Very strange that the U.S. is light years behind France in the care it gives it’s dialysis patients.
Beth, you mentioned nocturnal not requiring any special equipment and short daily does??? What do you mean by this? I am on nocturnal and I require a heparin pump and short daily does not. Other then that I think the set up is the same… Just needing some clarity…
LSB
The statistics could be much better. There are a multitude of factors that influence these numbers. Patients believe (or are led to believe by staff that don’t know any better) that dialysis must be done by an “expert” (read – nurse or dialysis technician). Many may have undiagnosed and untreated needle phobia. Doctors and nurses believe that they must have patients on in-center dialysis where they can watch over patients to assure that they do what they’re supposed to (forgetting that patients are on their own for 156 hours of the 168 hours in a week). Plus we can’t forget the financial disincentives, including the minimally reimbursed cost of training ($20/treatment add-on to the composite rate for a nurse for 5+ hours per treatment) and unreimbursed treatments over 3 per week. Not surprisingly, commercial payers balk at paying for daily/nightly treatments because the large dialysis corporations bill them at 8 or more times Medicare’s composite rate to (over)compensate for Medicare’s low reimbursement.
BTW, in France, Dr. Charra who has excellent survival statistics achieves this by prescribing 8-hour treatments three times weekly in-center. In the U.S. the average in-center HD treatment is 3.5 hours long. I am obviously a strong proponent of home dialysis. However, I believe that longer or more frequent dialysis anywhere is better than 3.5 hours of dialysis 3 times a week anywhere.
[QUOTE=Leafsunbear;10999]Beth, you mentioned nocturnal not requiring any special equipment and short daily does??? What do you mean by this? I am on nocturnal and I require a heparin pump and short daily does not. Other then that I think the set up is the same… Just needing some clarity…
LSB[/QUOTE]
I think you’re referring a posting from Dori. I believe what she meant is that dialysis facilities can put a standard dialysis machine with a heparin pump just like one that is used in a dialysis clinic in a nocturnal patient’s home. Although Fresenius now makes their machine for home use (2008K at Home), I know nocturnal patients who use the same Fresenius machines in their homes that their clinics use in-center. I wouldn’t be surprised to learn that clinics refurbish machines and put ones that have been used in-center into patients’ homes to keep costs down.
oops, misstake. Sorry for that. @ Dori, what do you mean by special equipment? The machine that is used for daily would not have anything on it that a nocturnal machine would have on it?? The only difference with a daily and a nocturnal machine is the heparin pump.
still confused;
LSB
LSB, it’s too much hassle to set up a “regular” machine for short daily 5 or 6 days a week, so the machines that are being used for it were designed especially to be easier to learn and faster to set up and take down. Nothing special is needed for nocturnal, as you’ve said, except a heparin pump.
Too much hassle? Really? I much prefer the hassless proceess of setting up the PHD but I would not want a provider to say no on my behalf if the PHD or System One were unavailable.
Having no appetite is a hassle. Being washed out 72 hours a week is a hassle. Having no energy is a hassle. But stringing a B Braun? - ehh, not that big a deal.
I board (upgraded to 1st with my miles) in about 15 minutes and I am down to 60% battery power (I’ve been spending too much time on all the political blogs). I know how big a hassle it is to have to dialyze every night with no set up and I would not want to add to the burden by messing with a machine each time I wanted to dialyze but the marginal hassle of using a B Braun v. the System One is small - depending on the RO one would be using for the standard machine, some water treatment regimes are hassles.
