Recently, CMS contracted with the National Quality Forum (NQF) to “identify and endorse measures for public accountability and quality improvement related to end-stage renal disease (ESRD) care at both facility and physician levels.”
A new set of voluntary Clinical Performance Measures (CPMs), developed by the ESRD Measures Steering Committee/Technical Advisory Panel is up for public comment.
The previous set of CPMs for ESRD addressed only patient blood parameters:
[ul]
[li]Dialysis adequacy (PD & HD)
[/li][li]Vascular access
[/li][li]Anemia
[/li][/ul]
But, this time, one proposed measure is based on an annual assessment of eligible adult patients using the KDQOL-36, a reliable, valid survey of kidney-specific health-related quality of life.
The KDQOL is the SF-12 plus items to assess burden of kidney disease, symptoms/problems, and effects of kidney disease. For the first time, patients’ perceptions of their own lives (which have been shown in tens of thousands of ESRD patients to predict morbidity & mortality as strongly as Kt/V and serum albumin) can be assessed as a measure of ESRD care quality.
As long-time proponents of rehabilitation, we believe that including this KDQOL measure is the most important single thing we can do right now, as a community, to improve the quality of care for patients. If you agree, please take a few moments to leave your comments on-line at: http://www.qualityforum.org/projects/ongoing/esrd/comments/post.asptoday! The deadline is 6 pm EDT Sept. 7, 2007.
Please feel free to share this information with anyone you believe would be interested in supporting this effort.
When you click the link to leave your comments, use the pull-down menu to go to #24: Assessment of Health Related Quality of Life using KDQOL-36. As a dialyzor, it would be very helpful for you to say something about why you believe it’s important that the community look at quality of life, which is a uniquely human aspect of care. It really does only take a minute to do this, because they limit comments to 1,500 characters (not words).
Also, you can read the comments that are already there–so we’ll know who took the time to follow through! >;-) When I just checked, there were 4 comments. I’d like to see a lot more!
Hi Folks
This seems to go to the heart of the problem. Some of post of late have been on getting information to the consumer of dialysis products or services. The problem has been and will always be that the folks who run( not all) the dialysis services only see the consumer as a # on a chart. What is is the Kt, iron , etc. Not how the person is really doing. Since I’ve in in this mess it’s not how I’m feeling and doing ,but what the #'s say I feel.
Are all dialysis provides taken part in this survey?
And if so why not a form at your center that a person could take home and think about then fill out and mail to the folks who are conducting the survey? Is this just for people who have computers? I looked at this early and will not take part unless my center gives me the form and ask me to fill out if I want and mail back.
bobeleanor
The form on-line is to submit public comments about the idea of using quality of life–instead of just chemistry numbers–as a measure of ESRD care quality.
The KDQOL tool itself is a paper-and-pencil survey that dialysis centers would probably hand out and ask folks to return. It does not require a computer.
These are two separate things–there is an opportunity until Sept. 7 to say, “I think quality of life is improved by good dialysis care, so quality of life should be measured in people with ESRD.” If enough folks support this idea, it will have a better chance of succeeding. Otherwise, we’re back to hemoglobin, Kt/V, bone disease markers, etc., by themselves to measure the quality of care, and you don’t need to be delivering dialysis to people to collect those measures and claim you’re giving good quality care.
I was getting ready to send in a comment, but after reading this thread I still don’t know what you mean by measurement of quality of life- would you please provide a more specific explanation of what this entails? Also, where can I read the other comments?
Jane, quality of life is measured with a paper-and-pencil survey that patients fill out. The survey included in the proposed CPMs is the KDQOL-36, which has 36 questions. The first 12 items of this survey are the SF-12, a tool that has been shown to predict hospitalization and survival in people on dialysis. The other 24 items ask about things like symptom burden.
Up until now, the only “clinical performance measures” that have been used by the renal community look at people’s blood–not at the whole person. This essentially means we’ve been practicing veterinary medicine: not one aspect of “quality” of care has anything to do with being a human being with a life that is affected by kidney disease and its treatment. This proposed CPM is a chance to finally change that. I hope people will take 3 minutes to comment on it.
As far as seeing other comments, when you click this link: http://www.qualityforum.org/projects/ongoing/esrd/comments/, instead of choosing Post comment, choose View submitted comments. If you look under both “General comments on the report” and #24, you’ll see all of the relevant ones for the KDQOL-36 measure.
Ok thanks, Dori. This better helps me to understand what you are speaking about here. Is the KDQOL-36 survey posted somehwere on the net. I’ve never seen one before and would like to check it out.
Tomorrow is the last day for giving your support to using quality of life as one measure of good quality kidney care.. Please take 3 minutes to click http://www.qualityforum.org/projects/ongoing/esrd/comments, then click Leave Comment and pull down #24 - Assessment of Health Related Quality of Life using KDQOL-36.. You’ll see a text box that will let you write up to about 150 words. Most people have just done 3 or 4 sentences.
If you want the renal community to care about more than just your blood, please do this today.
Dori, I know this is last minute, but I have had such a busy week that I have not had one second to go to the info you provided on KDQOL-36. Is there any way you or Beth or someone else can sum up the meaning of these quality of life measures, because I feel like I can not write an intelligent comment without fully understanding what they are.
Hi Jane, I’m afraid I’m not quite sure what you mean by “the meaning of these quality of life measures.” If you can tell me what you don’t understand, I can see if I can help.
Beth wrote: "But, this time, one proposed measure is based on an annual assessment of eligible adult patients using the KDQOL-36, a reliable, valid survey of kidney-specific health-related quality of life.
The KDQOL is the SF-12 plus items to assess burden of kidney disease, symptoms/problems, and effects of kidney disease. For the first time, patients’ perceptions of their own lives (which have been shown in tens of thousands of ESRD patients to predict morbidity & mortality as strongly as Kt/V and serum albumin) can be assessed as a measure of ESRD care quality.
As long-time proponents of rehabilitation, we believe that including this KDQOL measure is the most important single thing we can do right now, as a community, to improve the quality of care for patients"
If I could see the KDQOL I would know specifically what is being talked about here. Since I haven’t had a chance to look it up can you give some specific things it covers? The description above is too general for me to make out what it is about.
Unfortunately, while the KDQOL-36 is available for free download from the site we pointed you to, we would be violating the intellectual property of the developer if we post it openly when they require (free) registration. But here is a link to the SF-12, so you can see for yourself what kinds of questions it asks: http://www.sf-36.org/demos/SF-12.html. In addition to the SF-12, the KDQOL also has questions about:
– Symptoms/problems
– Effects of kidney disease
– Burden of kidney disease
In August, Beth asked folks to submit comments about the proposed clinical performance measures (CPMs)–especially the measure of health-related quality of life (HRQOL). You guys and others really came through: more comments were submitted for that measure than for all of the rest put together!
Just yesterday, we found out that the National Quality Forum has approved the KDQOL–with no sunset provision–to become a new CPM, a measure of dialysis quality. There’s just one more hoop now, CMS approval, and we fully believe that will happen.
This is a landmark for the renal community–for the first time, there will be a measure of quality that can only come from all of you, because it is your impressions of how your treatment affects your physical and mental functioning. Our hope is that measuring HRQOL will lead to improving it. And, of course, one thing that is known to improve it is home dialysis.
So, Beth and I are very excited about the potential for this new measure to really help improve care for U.S. dialyzors.