Dialysis Facility Reports - how does your unit stack up?

[Bill Peckham]

Pro Publica has released the Dialysis Facility Reports for every dialysis unit in the country from 2002 to 2010. There is a lot of information available through a snappy data base interface.

Check out the article http://www.propublica.org/article/dialysis-data-once-confidential-shines-light-on-clinic-disparities

And then check out your unit: http://projects.propublica.org/dialysis/

Post questions, comments and findings.

[Bill Peckham]

When I entered my zip code the data base brought up the four units closest to my house and presented summary information from the reports. You can then click on one of the units to view its page. At the bottom of the unit page you'll see the years 2002 - 2010 (if the unit has been open the whole time) and that is where you can view the actual DFR.

Looking at the actual DFR is interesting because it gives a lot more detailed data. One thing it does is give the unit's performance in the context of state performance. I would be interested in seeing state performance, state by state.

If you are checking out the 2010 DFR for your unit post the state and network averages for standard mortality rate (line 1j of the DFR), percent of hospitalizations due to infection (line 2m, a percent of 2e), total hospitalization days (line 2e), standard transplant rate (line 3k) and percent of patients on the transplant waitlist (line 4b). I'll update this post so we have a complete list in one place.

----------------------------------------------------------------
STATE               (3k)STR         (4b)Patients on the waitlist
Nation(5,413)     1.00                        24.2 
AL(121)               .7                         33.9 
AK( 8 )               1.03                       25.5
AZ (103)            1.19                        21.7
AR ( 64)             0.87                         9.9 
CA(484)             1.00                         36.5
FL(326)              1.01                        17.0
IL(219)              1.22                         27.0
NJ(23)               1.30                         30.9 
WA(69)              1.3                          22.8 
----------------------------------------------------------------
STATE           (1j)SMR      (2m)Septicemia(%)  (2e)Days hospitalized per PY
Nation             1.00               12.0                          14.5
AL                  1.08               10.5                          13.1
AK                  1.03                6.9                           9.59
AZ                  .98               12.4                          13.7
AR                 1.14               13.7                          16.4
CA                  1.00               11.5                         12.3
FL                  1.12               14.3                          16.5
IL                   1.00               13.6                          14.5
NJ                    .98               14.7                          17.3
WA                  .93                 9.7                           9.32

----------------------------------------------------------------
NETWORK                      (3k)STR         (4b)Patients on the waitlist
3 (NJ,PR,VI)                     1.10                        23.3
7 (FL)                             1.01                        17.0
8 (AL,MS,TN)                    0.77                        23.9
10 (IL)                             1.22                        27.0
13 (AR)                            0.76                       27.0 
15 (AZ)                            1.20                        22.0
16 (WA,OR,ID,MT,AK)         1.32                        19.6   
17 (N CA)                         0.98                        47.8           
18 (S CA)                         0.94                        27.1       
----------------------------------------------------------------
NETWORK                      (1j)SMR      (2m)Septicemia(%)    (2e)Days hospitalized per PY                                                                                                                       
3 (NJ,PR,VI)                     1.10              15.0                        16.7
7 (FL)                             1.12              14.3                        16.5
8 (AL,MS,TN)                   1.03               11.6                        13.4
10 (IL)                             1.00              13.6                        14.5
13 (AR)                            1.13              13.6                        16.2
15 (AZ)                            .95               14.7                        16.5
16 (WA,OR,ID,MT,AK)          .95                8.7                          9.1   
17 (N CA)                          .98                9.3                         10.7           
18 (S CA)                         1.01              12.4                         13.0       

[okarol]

Jenna's ex-dialysis center looks pretty good. The disturbing bit of info: Date of Last Inspection April 11, 2002

[okarol]

Bill, I found Jennas clinic but I don't see the line numbers you refer to? http://projects.propublica.org/dialysis/facilities/52619

[MooseMom]

Bill, like Okarol, I am not sure I found the state stats you were asking about, but I found the particulars on my clinic.

http://projects.propublica.org/dialysis/facilities/142614

Does this help?

[Bill Peckham]

You have to go to the actual PDF for 2010. At the bottom of the page you link to MM there is a row of years. Click on 2010 to see a DFR in its entirety - a lot of details. You'll see each row of data is labeled with a number and letter. 18 pages of actual numbers. When do we ever get actual numbers?!


Very interesting stuff.

[MooseMom]

I think my brain has exploded...

I skimmed the whole 18 pages and then printed them out.  It's nice to have a lot of numbers, but you need to be careful in how you interpret them.  I guess the best thing to do is to look at the types of patients that receive D at the unit and see where you might fit in.  The vast majority of patients at my clinic are diabetic, hypertensive or have some other cardiovascular difficulty, so the numbers are going to reflect that, I suppose.  I have none of those co-morbidities, so I am not sure where I fit in.  I do see that there are only 3 other patients doing home hemo; I wish there was some way to find out if these patients were doing NxStage or home nocturnal. 

On the very last page, Table 12: Survey and Certification Activity...well, that's where I get a bit confused.  The report states "12.c  Compliance condition after last survey..."Does not meet requirements".  What does that mean?  And 12e CfC deficiencies cited at last survey...V110 Governing body and management..."Yes, cited:...what exactly was cited?  Does this mean that the Governing Body and management of this clinic is not very good?

[Bill Peckham]

I think my brain has exploded...

I skimmed the whole 18 pages and then printed them out.  It's nice to have a lot of numbers, but you need to be careful in how you interpret them.  I guess the best thing to do is to look at the types of patients that receive D at the unit and see where you might fit in.  The vast majority of patients at my clinic are diabetic, hypertensive or have some other cardiovascular difficulty, so the numbers are going to reflect that, I suppose.  I have none of those co-morbidities, so I am not sure where I fit in.  I do see that there are only 3 other patients doing home hemo; I wish there was some way to find out if these patients were doing NxStage or home nocturnal. 

On the very last page, Table 12: Survey and Certification Activity...well, that's where I get a bit confused.  The report states "12.c  Compliance condition after last survey..."Does not meet requirements".  What does that mean?  And 12e CfC deficiencies cited at last survey...V110 Governing body and management..."Yes, cited:...what exactly was cited?  Does this mean that the Governing Body and management of this clinic is not very good?

I think you're right we will have to learn how to read the numbers. That's one reason I wanted to get a list of states going because I think a unit's performance should be seen within the context of their state and network.

The Vtags reference specific Conditions for Coverage, surveyors use the CfCs as their guide when they survey. (more info on CfCs)

There are a lot of parts to the CfC. One has to do with the unit governance - for instance there has to be people identified as responsible for operations as spelled out in written policies and procedures. In fact the policies and procedures have to be reviewed and signed off on by the corporate governance body. As a NKC trustee I reviewed NKC P&Ps, as chair I had to sign off on them.

[MooseMom]

Thanks for that, Bill.

[carol1987]

Facility  Fresenius Englewood NJ
1J  SMR          2M       3K        4B
.93              15.6     1.87       31.3

State  NJ
.98               14.7     1.30     30.9


Network  Fresenius
1.10             15.0      1.10     25.3

[Bill Peckham]

Thanks Carol. I added NJ, IL and CA, and I broke the info into Tx and Dx

I think the state/network averages underscore that people using dialysis are largely hospitalized with septicemia - which can be minimized through strict adherence to best practices.

It also shows that medical practices and outcomes vary from region to region. Your zip code matters!

[billmoria]

I am astonished at how many people have looked at this so quickly. I too, need time, to look at it and take it all in.

I can only tell you that in the clinic in Florida where I felt sick after each session the dialysis adequacy was 78%!!!!!!!!!!! In the clinic in Enfield, Ct which I loved the dialysis adequacy was 98%.  Maybe that explains why I felt good coming out of the Enfield one and lousy out of the Florida one.

I found the septicemia level way high.

Carol, I can't believe the unit your daughter was in was not inspected since 2002 - There ought to be a law!

Bill's work will take some time to look over but he has done remarkable work already.

Moose's Mom   did you click on the compare to four nearest to compare them. You center looks good on here.  (ps  did you son make it without any trouble?)

Good Start - we need all the info we can get....

[MooseMom]

billmoria, yes, I did have a look at the other four nearest centers.  Actually, I had looked at this info some months ago but had not seen it in its entirety, ie in PDF form, which gives much more detailed information about what all of those funny figures actually mean.

I agree with the septicemia concerns.  That's how my mom died...sepsis due to a UTI...at least that's what I was told and that's what her chart said.  I am not aware of infection in her access (av fistula), but septicemia in any dialysis patient raises a red flag in my mind.

I was pleased to see that the majority of patients in my clinic have an AV fistula but but was disappointed to see that a staggering number didn't when they first began dialysis.

I was glad to see that 100% were informed that transplantation was an option.

I was not glad to see that the average GFR prior to D was 14.2 in 2009.  I think that's a bit high and is in fact higher than the state/network/national average.  Mine is a small clinic not managed by one of the big providers, so maybe my neph is a bit conservative in this regard.  I'm certainly not going to go by gfr alone.
 
And yes, my son made it in from London; he was rebooked and the airlines upgraded him to first class!  Thanks for asking.

Bill, I am a bit confused about table 8, namely the distinction between 8h "Average duration of ESRD (years)" and 8i "Years since start of ESRD."  Can you shed some light?  Thanks.

[jbeany]

My old centers were both equal or above the state averages for survival and usually lower on the mortality numbers - but they were affiliated non-profits so I'm not really surprised.  I knew I was getting good treatment compared to the horror stories I heard from others on here. 

[Bill Peckham]

Bill, I am a bit confused about table 8, namely the distinction between 8h "Average duration of ESRD (years)" and 8i "Years since start of ESRD."  Can you shed some light?  Thanks.

Sections 8 gives a snapshot of the unit
On 12/31 there were x number of patients being treated by the unit (8a)

8h says that the average length of time using dialysis among this group

8i breaks it down by periods of time - giving percentages of each group.

It's two ways to describe the vintage of the patient population. 8h is summarizing; 8i gives more detail. Maybe you'd see two units both with 8h=5 but under 8i one unit might have more long term dialyzors. I could theorize that all else being equal I would take the unit with more long term dialyzors but it might mean that for some reason they have a high first year mortality too.

I think the way to use this info when shopping units is to use it to inform your questions. For instance if I saw a unit with a lot of long term dialyzors and a high first year mortality that would be something I would ask about. The unit may be serving two patient populations under one clinic id number - the Seattle Kidney Center has three treatment floors under one id number. There is a standard community center with 20 or so stations on the third floor and a Special Care Unit (PDF) with 15 beds on the second floor. On the forth floor there is NKC's large home programs that is following about 250 people at home on PD and HD. I haven't looked through the SKC DFR today but it has always been an outlier in how the numbers correlate.

This paperwork detail - all NKC home patients appear on the SKC DFR - also means that NKC's other community centers all look like they have no home dialysis when several are the site of clinic visits.

[MooseMom]

KABOOM!

(That was my head exploding.)

OK, let me ask you this.  With this report in hand, and knowing that I am younger than the average dialyzor at my unit AND knowing that I have no comorbidities (whereas the average number of comorbidities in my unit is 5), to which bits of this report should I pay most attention?

[carol1987]

I am disturbed that my centers septicemia # is the highest up there so far....  What does that mean..... what should I do  about it?

[MooseMom]

This is a really important and informative thread.  What would you mods think about making it a "sticky"? 

[Bill Peckham]

I am disturbed that my centers septicemia # is the highest up there so far....  What does that mean..... what should I do  about it?

I think the variation between states is significant but I don't have a ready answer as to why there is variation. The thing about septicemia is that it is almost entirely preventable. In FL 1 out of 7 hospital days are due to septicemia or 2 days a year.

Why would it vary from state to state? We could guess but it isn't clear.

Then you need to look at your unit and how it compares to others in the state. The thing I think about is that I have been on dialysis for over 20 years - I have never had septicemia. In the entire time I have been on dialysis I have never had a dialysis related hospitalization except for the parathyroidectomy and a renal cancer, neither directly related to a treatment. 

Dialysis should not result in hospitalization. I think there is a lot individuals can do to protect themselves. To start with wash your arm and hands when you arrive at the unit. Be theatrical about it and set an example. And then ideally do what I did and cannulate yourself incenter. Take responsibility for your cannulation and make sure you do a good job. Support staff efforts around hand washing and encourage other patients to wash their own arm and hands. But the main thing is that the point where the needle enters the arm has to be clean, you the patient can take responsibility for that.


I haven't looked but one leading cause of septicemia is catheter use, so one way to protect yourself is to have a fistula or a graft instead.

[MooseMom]

Bill, that's just the sort of info I like...not merely what the risks are but, rather, what we as patients can do to minimize those risks.

[Bill Peckham]

KABOOM!

(That was my head exploding.)

OK, let me ask you this.  With this report in hand, and knowing that I am younger than the average dialyzor at my unit AND knowing that I have no comorbidities (whereas the average number of comorbidities in my unit is 5), to which bits of this report should I pay most attention?

I'm not sure MM. To me the difference in dialysis unit to unit correlates most closely to staff and their experience. Even with all this information I would want to have a sense for what it is like to work at the unit. What is the staff turnover?

That said it can be fun to dialyze at a unit where everyone knows your name, and the staff have been there forever but that doesn't mean it is safe. There, just like everywhere else, the safest thing to do is take ownership of your health and I would need to be at a unit that encourages, supports, celebrates patients that own their health. One question that tells me just about all I need to know - do some patients (veteran, engaged patients) at the unit determine their own target fluid removal?

As far as these DFRs and what I am getting out of them ... I've always been struck by the numbers. The actual numbers. That's how many people went through the unit, how many individuals left via Tx or death. The hospitalization - how many in that unit, among those people, where hospitalized. How many hospitalizations could have been avoid if every other day dialysis was an option? To me looking at the DFRs is seeing the unit in context. I see the in flow and out flow of patients and I think of the staff living these numbers with us. We normally get to know one sixth the unit this is an accounting of the whole thing. It's a different view, it's the view the staff know.

MM I think the report should tell you that you are entering a world that is mostly not about you. You won't be special in a room full of dialyzors. You need to care the most about you. Everyone else is busy.


Edited to add: That's a little strong but the numbers are astounding. You're entering a relationship with a unit and I think this lets you know a little more about who you're partnering up with, think of it like a relationship. It use to be only the unit that knew, or thought they knew, everything about you; you knew their phone number. Now you know a little about them. It's not that any one piece of information is actionable but it should inform you. This evens the playing field a bit.

[MooseMom]

Even playing fields are nice...

Thanks for that.  I agree with the view that I am not special and that everyone else is busy, that this is a world mostly not about me.  It's a sentiment that I have lived by for years, and it will serve me well once I start D, too, so thanks for the reminder.

[Bill Peckham]

There is a cool feature where you can rank all units in a state by all sorts of criteria.

Go to the front page http://projects.propublica.org/dialysis/

Select from the state list. You should get to a page that shows a map with the units represented by dots; underneath the map a scrollable list of all the dialysis units in the state. I selected California so it's a list of over three hundred units.

Between the map and the list there is a box "SELECT FACILITY CRITERIA THAT MATTER TO ME". Click that box.

Now when you check one or more of the boxes on the fly out menu, those categories are now displayed as part of the unit list. You can click on the column heading to sort the list.

Very cool.

[MooseMom]

Oooh, that IS cool!

[Hemodoc]

Bill, great posts as always.  This tool if used by dialysis patients has the potential to truly change dialysis in America.  The wider it is published and the more people it reaches the better.  Wait till the widgets in the dialysis widget factory start questing Willy Wonka on why the chocolate factory isn't working right. Perhaps we can actually regain our autonomy and patient choice as dialyzors. It is a welcome addition.