By Bill Peckham
This is moving too fast will have to clean it up in retrospect. Conference handouts are available generally but these speakers didn't get them posted.
Daily Hemodialysis: An Update on On-Going Registries and Clinical Trials - Robert Lockridge, MD, John Stivelman, MD, Presiding
10:45 Robert Lindsay, MD, International Registry
Why do we need a registry? To conduct observational studies, compare HD regimes to each other and evaluate the economics of frequent HD; evaluate a number of clinical and procedure factors. Currently in the registry N(NHD)- 1,7245; N(SDHD)=367; N(limited Care CHD)= 5,531.
IQDR ASN Presentation Incenter NHD vs Self care conventional HD objective to compare all cause mortality
SCHD already shown to have a .76 SMR both groups are comparable based on measurable factors
Incenter NHD matches up well but there is still need a RCT
11:05 Nathan Levin, MD, NIH Frequent Short Daily Trial
Outcomes standardized mortality and standardized SF-36 QOL score
Secondary outcomes also collected
11:25 Michael Rocco, MD, NIH Nocturnal Trial
A lot of trouble recruiting people to participate in nocturnal arm of the NIH Frequent Hemodialysis Network study
11:45 Bert Jaber, MD, NxStage Freedom Study
Primarily looked to see if use of the NxStage would result in lower hospitalization rates and lower non-treatment related costs.
Questions Dr. Blake - you're all having trouble recruiting females but that is not an issue in PD - can you speculate why? Gender role persistence (Anna needs to weigh in).
Dr. Freedman - underlines the low number of people who made it to the NIH trial as reported by Levin - 7.2% Why can't we sell daily dialysis. What are we going to learn that's applicable to our patients? Levin what it tells us about applicability will be very difficult. The value of the study is important. Rocco - we had to remain neutral, we were not allowed to "sell" daily dialysis. Stivelman - we need to consider the training deficit ... young docs don't have the experience. Lindsay - the problem may be the incenter frequent element, it's hard for patients to get to a center every day.
Kjellstrand is trying to understand the point given the small enrollment numbers "you won't find out anything we don't already know". Rocco well we're RCT, the others are observational.
Witten: is having a helper a barrier to women in the home trials. Lockridge - it's a legal issue for some providers
I am too tired to write and pay attention, I'll have to switch to wrap ups and summaries.
-





If you measure the change in quality of life for the home hemodialysis option, it is important that you measure not only the change in the patient's quality of life but that in the patient's helper. I found that in my experiment with home daily hemodialysis, not only did it greatly magnify the dialysis burden in my own life, but it also threatened the rapid destruction of my wife's career, since there was no way she could perform the part-time job of dialysis assistant as well as handle her own highly-ambitious day job. Perhaps this answers your question about why women have trouble accepting home hemodialysis. It may have to do with husbands being more likely than wives to have highly demanding employment, which makes the role of dialysis helper too damaging to the family unit as a whole.
Posted by: somerville | March 08, 2010 at 02:11 PM
Anonymous Hemodialysis Survey:
I am Enrique Santiago (using my colleague's facebook to spread the word). Having been on hemodialysis for 10 years myself, I am a doctoral student at Columbia University who is decidated to improve health of hemodialysis patients. Basically, I am trying to learn how patients living with End-Stage Renal Disease (ESRD) on hemodialysis adjust, adapt, and cope over time. If you or someone you know are under going hemodialysis, I am kindly asking you to fill out a survey to help us learn what people like you or your friend have learned about the best ways to cope. We want to obtain this information so it can be provided to other patients with ESRD on hemodialysis, perhaps assisting them in coping so they are empowered to engage in the very best self-care, and experience the highest possible quality of life.
I basically need 100 hemodialysis patients to complete a survey for my dissertation study. I would be so very grateful if you could spend 15-30 minutes of your (and your friends') time to complete the survey.
Once 100 people have completed the entire survey, the program will automatically send out Wal-Mart gift certificates (bar coded) to three randomly chosen e-mail accounts ($200, $100 or $75) without in any way linking your identity to the survey results. You can print out the gift certificate, if you are a winner, and use at any Wal-Mart store.
If you can, please go to http://www.surveymonkey.com/s.asp?u=777873157187 ASAP to fill out the survey and pass it on to your friends! I have my official advertisement below which you can copy and paste in your email.
Thank you!!
Enrique Santiago
Posted by: Enrique | March 13, 2010 at 02:37 PM