ESRD papers and presentations

[cariad]

All right, everyone, I could use a bit of input for my classes if anyone can offer any thoughts.

For my Public Health course, I need to write a paper and then present it to the class. For this one, I am certain that I want to examine the failings of the current American dialysis system, especially how both productive life years and expense could be saved by switching to a model that focuses more on trying to get patients out of clinics whenever possible and desired. What I love about this topic is that there is compelling, cross-cultural evidence that should inform our public policy. Also, how often is there a fairly simple answer that combines both better care and lower cost? I have had two discussions with this group, and they are all Public Health students, not anthropology, so they come at this from a very different perspective. Many of them already work in either public health or medicine, so I see this as a wonderful opportunity to get the message out to people who may be in a position to effect change. Anyway, this is completely foreign territory to me. Does anyone know of good journal articles (must be peer reviewed) that give a clear overview? Or any must-read articles on some aspect of the comparison between home and clinic dialysis?

I am struggling to come up with a good topic for Biometry (biostatistics), that one only requires a presentation. The example he showed us was about the flying snakes of Borneo, which was really cool in that it's an animal I'd never seen before, but statistically not terribly interesting. I wanted to look at stats related to the list, but I fear that is so enormously complicated that I would spend too much time explaining what we were talking about, and not enough time digging into the numbers. I was considering doing something on PRA values, maybe how higher values affect wait times on the list, or how antibodies are classified as low, moderate, and high risk, but I am afraid I'd be so out of my depth that I would make a hash of it. I am interested in all of these things, just not terrifically well-versed in HLA. I also have been mulling an article that I found on pbfluids.com over for quite some time. I found the full PDF of the original article http://www.ncbi.nlm.nih.gov/pubmed/20645941 but need to take the time to read it very carefully to see if there is a statistical topic of discussion there, with methods that I understand. I don't know. I feel directionless on this one, so if anyone knows of any really great stats related to ESRD, please let me know.

Finally, there's my Psychological Anthro class. I was hoping to talk to people in Vegas about this, and this would only be preliminary research, never to be published and total anonymized (probably not a real word, but you know what I mean). Because of these conditions, and because it is just for a class, informed consent and an IRB are not required. I'll see when I get to Vegas if there is an opportunity to ask for opinions from other members. Since we are all there for such a short time and I imagine most of us want to do something other than constantly talk shop, if it does not work out, no problem. The subject would be conceptions of the self and how those have been altered (or not) by either kidney failure, the eval process, or transplant. The prof wants this paper to be grounded mostly in data from texts, but was open to hearing what any of you have to say about it. Well, thanks for reading....

[MooseMom]

Why not try looking at RenalWeb?  Also www.homedialysis.org.  Dr. Agar is Australian, so you could read a lot of what he says about cultural differences in how home dialysis is prescibed.  Hong Kong and Singapore in particular are very, very successful with their home dialysis programs.  Dr. Agar is very familiar with dialysis in those countries, in Australia and here in the US (in that here in America, so few patients get their dialysis at home).  There is a forum on that site, and you could ask Dr. Agar directly.

Renal Fellow Network might be worth a look, too.

I've had fsgs for 20 years, am not yet on dialysis (but oh so close) and have gone through the eval process, and I would be happy to talk to you about it in LV if you think I have anything of value to offer.

[natnnnat]

Does anyone know of good journal articles (must be peer reviewed) that give a clear overview? Or any must-read articles on some aspect of the comparison between home and clinic dialysis?

Take this question to a librarian at your university library.  In Australia and I think in the US too, subject librarians are paid to sit down with postgraduate students and help them find such papers, for example for awhile I was the "Social Sciences" librarian at a university.  Find the librarian who supports your faculty or discipline.  Email him/her asking for an appointment, and explaining the situation.    Alternatively, here we also have reference librarians, you can walk into the library off the street and sit at the reference desk.  But then its pot luck, you probably wont get the specialist librarian who has spent a few years working with academics from your field... and also whoever you do get will have an eye on who is behind you in the queue.

[cariad]

Thank you both so much!!!

Nat, a specialist librarian? That is just about the coolest idea I could ever imagine. I so hope we have such a specimen here. Regardless, I would never have even thought to go to the library and actually speak to a librarian and that is such a great suggestion. We have a library sciences post-grad degree here and they have to be one of the most thoroughly trained people in the country - it takes an average of four years to get an MLS at this school. I'll see if I can get leads for stats articles and Public Health articles. Awesome. I have a plan, now!

I've had fsgs for 20 years, am not yet on dialysis (but oh so close) and have gone through the eval process, and I would be happy to talk to you about it in LV if you think I have anything of value to offer.

If I think you have anything of value to offer?! Now listen up and listen good, MM: you are one of the most insightful and informed individuals on this site and I would be honored to sit down with you and discuss this or anything else. Thank you for this offer, it means so much to me.  Also, many thanks for the Dr. Agar/homedialysis suggestion. I will get right on that. I hope to be able to post a link or something to my Public Health demonstration for open critique from members.

[Bill Peckham]

hmmm a biostatistics paper. Interesting.

The USRDS is available to researchers but I've never looked into what's involved. One thing I wondered if someone could tease out of the available data is to look at the subset of dialyzors who start and finish the year using dialysis (exclude for example newbies and people who get Tx). I Think it would be < 300,000 in 2008 (last year with full data year).

And then examine them by how many treatments they received during the year. You'd have a group that received 156 (interested to know how many actually got all 156 treatments) then you'd have people for all cause had fewer treatments - skipping to hospitalizations to people like me who traveled abroad - and then group people by how many treatments they received in the year.

I would think that EPO doses would be higher for instance in the group having the fewest treatments. Maybe you could find other interesting correlations.

Maybe look at 2007 data and then correlate to 2008 outcomes. I'd theorize that people who had 156 treatments in 2007 had better survival in 2008, for instance. I've always thought it would be interesting to group people by how many treatments they actually receive.

My total guess is that the average number of treatments a year, in the subset of dialyzors who start and finish the year using dialysis is mid 140s ... like 144 to 146. But I've never seen a number.

[cariad]

That's a fascinating idea, Bill. Thank you so much for turning me onto the USRDS - I did not even know such a thing existed. I had a quick look round and it looks like one could pose this question or any other to them via email, and so long as it is a question that can be answered with less than two hours effort, they will respond when they have time. I agree that that data would be fascinating to see. I will contact them when I get a chance and see if I can get that data at no charge.

The site mentions something about needing to have approved research (IRB, etc.) which I do not have yet, but I cannot tell which functions of the site that rule applies to. So, time to ask the university librarian. Perhaps they could help me make sense of how to best get info from USRDS. That information would be so incredibly valuable to my research, and my preliminary dissertation research. There are CDs that can be purchased, but they cost thousands per topic.

These are such great leads. Thank you!