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Care Center Data Released

R

Ratatosk

Administrator
Staff member
I also wonder if U of MN's numbers regarding going to appointments quarterly goes down because of recent articles about quality of care and the number of patients from around the world going to the clinic to meet Dr. Warwick. Plus with travel times/costs, maybe some are only able to afford going once or twice a year, but still got to a clinic closer to home.

Found it interesting that the BMI was lower. L
 
R

Ratatosk

Administrator
Staff member
I also wonder if U of MN's numbers regarding going to appointments quarterly goes down because of recent articles about quality of care and the number of patients from around the world going to the clinic to meet Dr. Warwick. Plus with travel times/costs, maybe some are only able to afford going once or twice a year, but still got to a clinic closer to home.

Found it interesting that the BMI was lower. L
 
L

ladybug

New member
Interesting stuff.... did anyone else notice the clinic in Washington D.C. is the ONLY clinic with aduts reaching the highest average FEV1?!? I was a bit surprised by that since you don't hear much about them. And, their other stuff looked better than most too. Anyone know anything about this clinic? I was surprised. I guess I expected Minneapolis to lead the charts on all factors. I thought it was ranked #1, however, perhaps they're just ranking based on children's FEV1 and not other criteria?


Anyway, I found this to be interesting stuff, yet a bit confusing to read. I wish there was a way to see all the clinics (or at least a cross section of them) side by side to make comparisons easier. There are several throughout the country I have been to, and to be honest, its daunting trying to go back and forth between them to see how they compare. Either way though, I'm VERY glad they did this. It is a step in the right direction, and my hope is it motivates clinics to step up to the plate if they don't do as well. I also agree however that these numbers can be largely due to other factors besides a clinic's particular view... poverty, air quality, access to exercise, access to high calorie food, etc. can all play a huge role. So, if you look at a particular place and wonder why BMI is low or high or whatever, it could be someone's access to high calorie foods where they live. I know in Texas, there was a fast food joint on every corner! lol.... Yet, in my hometown in ND, it was a COLD drive to get that malt from the local fast food place. I didn't go out nearly as often when a craving struck as I do here in Vegas. I don't know. Just some things to ponder.

Good stuff though... kudos to CFF!
 
L

ladybug

New member
Interesting stuff.... did anyone else notice the clinic in Washington D.C. is the ONLY clinic with aduts reaching the highest average FEV1?!? I was a bit surprised by that since you don't hear much about them. And, their other stuff looked better than most too. Anyone know anything about this clinic? I was surprised. I guess I expected Minneapolis to lead the charts on all factors. I thought it was ranked #1, however, perhaps they're just ranking based on children's FEV1 and not other criteria?


Anyway, I found this to be interesting stuff, yet a bit confusing to read. I wish there was a way to see all the clinics (or at least a cross section of them) side by side to make comparisons easier. There are several throughout the country I have been to, and to be honest, its daunting trying to go back and forth between them to see how they compare. Either way though, I'm VERY glad they did this. It is a step in the right direction, and my hope is it motivates clinics to step up to the plate if they don't do as well. I also agree however that these numbers can be largely due to other factors besides a clinic's particular view... poverty, air quality, access to exercise, access to high calorie food, etc. can all play a huge role. So, if you look at a particular place and wonder why BMI is low or high or whatever, it could be someone's access to high calorie foods where they live. I know in Texas, there was a fast food joint on every corner! lol.... Yet, in my hometown in ND, it was a COLD drive to get that malt from the local fast food place. I didn't go out nearly as often when a craving struck as I do here in Vegas. I don't know. Just some things to ponder.

Good stuff though... kudos to CFF!
 
L

ladybug

New member
Interesting stuff.... did anyone else notice the clinic in Washington D.C. is the ONLY clinic with aduts reaching the highest average FEV1?!? I was a bit surprised by that since you don't hear much about them. And, their other stuff looked better than most too. Anyone know anything about this clinic? I was surprised. I guess I expected Minneapolis to lead the charts on all factors. I thought it was ranked #1, however, perhaps they're just ranking based on children's FEV1 and not other criteria?


Anyway, I found this to be interesting stuff, yet a bit confusing to read. I wish there was a way to see all the clinics (or at least a cross section of them) side by side to make comparisons easier. There are several throughout the country I have been to, and to be honest, its daunting trying to go back and forth between them to see how they compare. Either way though, I'm VERY glad they did this. It is a step in the right direction, and my hope is it motivates clinics to step up to the plate if they don't do as well. I also agree however that these numbers can be largely due to other factors besides a clinic's particular view... poverty, air quality, access to exercise, access to high calorie food, etc. can all play a huge role. So, if you look at a particular place and wonder why BMI is low or high or whatever, it could be someone's access to high calorie foods where they live. I know in Texas, there was a fast food joint on every corner! lol.... Yet, in my hometown in ND, it was a COLD drive to get that malt from the local fast food place. I didn't go out nearly as often when a craving struck as I do here in Vegas. I don't know. Just some things to ponder.

Good stuff though... kudos to CFF!
 
J

Jem

New member
It is nice for all of us to now have at least some type of standardized statistics on the cf clinic's we go to. But I am wondering how many of us started going to our present clinic with an FEV 1 number lower than the national average?

Here is my example: I have been going to my present clinic for 5 years now and when I began there my FEV 1 was 48. You have to take into account that I only have one lung and was 43 years old at the time, so 48 was good under those circumstances. Now, 5 years later my FEV 1 is 47, which is not much of a change. I am very happy with being stable as is my doctor. However, I am sure my statistics are bringing down my clinic's FEV 1 average which would not represent the clinic fairly because they have done a wonderful job in keeping my FEV 1 stable.

I also go 4-6 times a year for checkups. I have a lung function test and sputum culture done at every visit and have been tested for diabetes at least 3 times in the 5 years I have been going there. All this is because I am compliant with their requests. So I would assume they would offer these same services to all patients but according to my clinic's numbers the statistics do not reflect that and it seem that patients are not receiving optimum treatment.

Having the information of national averages and setting national goals is vital but doctors can only do so much. We as the patients must be compliant and aggressive with being informed, taking our medications, doing treatments, exercise, etc...

There is that saying, "You can lead a horse to water but you can't make him drink." For a little balance and to get an even clearer picture I would love to see a statistic of how many of the patients at the clinics are compliant (day in and day out) with following protocol given to us by our doctors.

Those were just a few of my thoughts. All in all at least now having some sort of reporting of statistics is a huge leap forward for accountability and setting goals is always a good thing, for the clinics and for the patients.
 
J

Jem

New member
It is nice for all of us to now have at least some type of standardized statistics on the cf clinic's we go to. But I am wondering how many of us started going to our present clinic with an FEV 1 number lower than the national average?

Here is my example: I have been going to my present clinic for 5 years now and when I began there my FEV 1 was 48. You have to take into account that I only have one lung and was 43 years old at the time, so 48 was good under those circumstances. Now, 5 years later my FEV 1 is 47, which is not much of a change. I am very happy with being stable as is my doctor. However, I am sure my statistics are bringing down my clinic's FEV 1 average which would not represent the clinic fairly because they have done a wonderful job in keeping my FEV 1 stable.

I also go 4-6 times a year for checkups. I have a lung function test and sputum culture done at every visit and have been tested for diabetes at least 3 times in the 5 years I have been going there. All this is because I am compliant with their requests. So I would assume they would offer these same services to all patients but according to my clinic's numbers the statistics do not reflect that and it seem that patients are not receiving optimum treatment.

Having the information of national averages and setting national goals is vital but doctors can only do so much. We as the patients must be compliant and aggressive with being informed, taking our medications, doing treatments, exercise, etc...

There is that saying, "You can lead a horse to water but you can't make him drink." For a little balance and to get an even clearer picture I would love to see a statistic of how many of the patients at the clinics are compliant (day in and day out) with following protocol given to us by our doctors.

Those were just a few of my thoughts. All in all at least now having some sort of reporting of statistics is a huge leap forward for accountability and setting goals is always a good thing, for the clinics and for the patients.
 
J

Jem

New member
It is nice for all of us to now have at least some type of standardized statistics on the cf clinic's we go to. But I am wondering how many of us started going to our present clinic with an FEV 1 number lower than the national average?

Here is my example: I have been going to my present clinic for 5 years now and when I began there my FEV 1 was 48. You have to take into account that I only have one lung and was 43 years old at the time, so 48 was good under those circumstances. Now, 5 years later my FEV 1 is 47, which is not much of a change. I am very happy with being stable as is my doctor. However, I am sure my statistics are bringing down my clinic's FEV 1 average which would not represent the clinic fairly because they have done a wonderful job in keeping my FEV 1 stable.

I also go 4-6 times a year for checkups. I have a lung function test and sputum culture done at every visit and have been tested for diabetes at least 3 times in the 5 years I have been going there. All this is because I am compliant with their requests. So I would assume they would offer these same services to all patients but according to my clinic's numbers the statistics do not reflect that and it seem that patients are not receiving optimum treatment.

Having the information of national averages and setting national goals is vital but doctors can only do so much. We as the patients must be compliant and aggressive with being informed, taking our medications, doing treatments, exercise, etc...

There is that saying, "You can lead a horse to water but you can't make him drink." For a little balance and to get an even clearer picture I would love to see a statistic of how many of the patients at the clinics are compliant (day in and day out) with following protocol given to us by our doctors.

Those were just a few of my thoughts. All in all at least now having some sort of reporting of statistics is a huge leap forward for accountability and setting goals is always a good thing, for the clinics and for the patients.
 
S

SEANP

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>2perfectboys</b></i>

Almost all of the Florida numbers are well below others, wonder why that is?</end quote></div>

My son goes to the Orlando Nemours and I was not happy with their numbers either. I plan on talking to them to find out what we need to do to be more like MN's numbers.
 
S

SEANP

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>2perfectboys</b></i>

Almost all of the Florida numbers are well below others, wonder why that is?</end quote></div>

My son goes to the Orlando Nemours and I was not happy with their numbers either. I plan on talking to them to find out what we need to do to be more like MN's numbers.
 
S

SEANP

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>2perfectboys</b></i>

Almost all of the Florida numbers are well below others, wonder why that is?</end quote></div>

My son goes to the Orlando Nemours and I was not happy with their numbers either. I plan on talking to them to find out what we need to do to be more like MN's numbers.
 
E

Emily65Roses

New member
I may be the weird one, but I'm not going to be all up in arms about numbers. I don't personally give half a d*mn about the best clinic or Warwick or whoever or any of that garbage.

Again, I may be weird, but I'm more concerned with PERSONAL CARE. If you're at a clinic with good numbers *and* you can get good personal care, then good for you. What I talk about here is more concerning clinics with good numbers and less-than-wonderful care.

While I understand people are going to be drawn to the best numbers, please do not forget about personal care. For yourself, for your children, for your spouse, whatever the case may be.

My clinic's numbers aren't the best, but they're not dead low, either. They're *just* above the national averages. And that is perfectly fine by me. Not only because the numbers are at least average, but also because I'd follow my current doc to just about any clinic.

I don't know, I know I'm one of a <u>VERY</u> few, but it just bugs me out that people get SOOOOOOO effing wrapped up in the numbers. Yes, you want good numbers. But guess the hell what, guys? CF is <b>progressive</b>. No matter where you go or how good your clinic is or whatever else, your numbers *ARE* going to go down at some point.

Quite frankly, as long as you're satisfied with your care... who gives a d*mn what the numbers are? I know a lot of you do. Just consider not putting so much of your opinions of various places on the numbers. I get a PFT and a sputum culture every time I go. I get blood work once a year, and a chest X ray once a year. Yale may not be the cleanest d*mn clinic, but like I said, I'd follow John just about anywhere.

Pay attention to your DOC as well as your clinic. Pay attention to PERSONAL CARE as well as the stupid numbers.

And do me a favor, no one jump up my @ss about this (I know, I'm asking a lot). I <i>know</i> why the numbers are important, I know all the crap involved. You don't need to tell me. I just don't see why people sacrifice personal care for numbers. That's all I'm trying to say here.
 
E

Emily65Roses

New member
I may be the weird one, but I'm not going to be all up in arms about numbers. I don't personally give half a d*mn about the best clinic or Warwick or whoever or any of that garbage.

Again, I may be weird, but I'm more concerned with PERSONAL CARE. If you're at a clinic with good numbers *and* you can get good personal care, then good for you. What I talk about here is more concerning clinics with good numbers and less-than-wonderful care.

While I understand people are going to be drawn to the best numbers, please do not forget about personal care. For yourself, for your children, for your spouse, whatever the case may be.

My clinic's numbers aren't the best, but they're not dead low, either. They're *just* above the national averages. And that is perfectly fine by me. Not only because the numbers are at least average, but also because I'd follow my current doc to just about any clinic.

I don't know, I know I'm one of a <u>VERY</u> few, but it just bugs me out that people get SOOOOOOO effing wrapped up in the numbers. Yes, you want good numbers. But guess the hell what, guys? CF is <b>progressive</b>. No matter where you go or how good your clinic is or whatever else, your numbers *ARE* going to go down at some point.

Quite frankly, as long as you're satisfied with your care... who gives a d*mn what the numbers are? I know a lot of you do. Just consider not putting so much of your opinions of various places on the numbers. I get a PFT and a sputum culture every time I go. I get blood work once a year, and a chest X ray once a year. Yale may not be the cleanest d*mn clinic, but like I said, I'd follow John just about anywhere.

Pay attention to your DOC as well as your clinic. Pay attention to PERSONAL CARE as well as the stupid numbers.

And do me a favor, no one jump up my @ss about this (I know, I'm asking a lot). I <i>know</i> why the numbers are important, I know all the crap involved. You don't need to tell me. I just don't see why people sacrifice personal care for numbers. That's all I'm trying to say here.
 
E

Emily65Roses

New member
I may be the weird one, but I'm not going to be all up in arms about numbers. I don't personally give half a d*mn about the best clinic or Warwick or whoever or any of that garbage.

Again, I may be weird, but I'm more concerned with PERSONAL CARE. If you're at a clinic with good numbers *and* you can get good personal care, then good for you. What I talk about here is more concerning clinics with good numbers and less-than-wonderful care.

While I understand people are going to be drawn to the best numbers, please do not forget about personal care. For yourself, for your children, for your spouse, whatever the case may be.

My clinic's numbers aren't the best, but they're not dead low, either. They're *just* above the national averages. And that is perfectly fine by me. Not only because the numbers are at least average, but also because I'd follow my current doc to just about any clinic.

I don't know, I know I'm one of a <u>VERY</u> few, but it just bugs me out that people get SOOOOOOO effing wrapped up in the numbers. Yes, you want good numbers. But guess the hell what, guys? CF is <b>progressive</b>. No matter where you go or how good your clinic is or whatever else, your numbers *ARE* going to go down at some point.

Quite frankly, as long as you're satisfied with your care... who gives a d*mn what the numbers are? I know a lot of you do. Just consider not putting so much of your opinions of various places on the numbers. I get a PFT and a sputum culture every time I go. I get blood work once a year, and a chest X ray once a year. Yale may not be the cleanest d*mn clinic, but like I said, I'd follow John just about anywhere.

Pay attention to your DOC as well as your clinic. Pay attention to PERSONAL CARE as well as the stupid numbers.

And do me a favor, no one jump up my @ss about this (I know, I'm asking a lot). I <i>know</i> why the numbers are important, I know all the crap involved. You don't need to tell me. I just don't see why people sacrifice personal care for numbers. That's all I'm trying to say here.
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

I may be the weird one, but I'm not going to be all up in arms about numbers. I don't personally give half a d*mn about the best clinic or Warwick or whoever or any of that garbage.



Again, I may be weird, but I'm more concerned with PERSONAL CARE. If you're at a clinic with good numbers *and* you can get good personal care, then good for you. What I talk about here is more concerning clinics with good numbers and less-than-wonderful care.



While I understand people are going to be drawn to the best numbers, please do not forget about personal care. For yourself, for your children, for your spouse, whatever the case may be.



My clinic's numbers aren't the best, but they're not dead low, either. They're *just* above the national averages. And that is perfectly fine by me. Not only because the numbers are at least average, but also because I'd follow my current doc to just about any clinic.



I don't know, I know I'm one of a <u>VERY</u> few, but it just bugs me out that people get SOOOOOOO effing wrapped up in the numbers. Yes, you want good numbers. But guess the hell what, guys? CF is <b>progressive</b>. No matter where you go or how good your clinic is or whatever else, your numbers *ARE* going to go down at some point.



Quite frankly, as long as you're satisfied with your care... who gives a d*mn what the numbers are? I know a lot of you do. Just consider not putting so much of your opinions of various places on the numbers. I get a PFT and a sputum culture every time I go. I get blood work once a year, and a chest X ray once a year. Yale may not be the cleanest d*mn clinic, but like I said, I'd follow John just about anywhere.



Pay attention to your DOC as well as your clinic. Pay attention to PERSONAL CARE as well as the stupid numbers.



And do me a favor, no one jump up my @ss about this (I know, I'm asking a lot). I <i>know</i> why the numbers are important, I know all the crap involved. You don't need to tell me. I just don't see why people sacrifice personal care for numbers. That's all I'm trying to say here.</end quote></div>


For the first time I TOTALLY agree with you. I wouldnt up & leave my clinic because they arent at the top. The connection I have with every person involved in my care is soooooo important to me. I have known most/many of them for 30 years. All of them from the office staff to housekeeping/food service on the hospital floor have seen me be an annoying teenager, graduate high school, get married (twice) and have a baby. The thought of having to start the relationship connection again makes me sick to my stomach & that is assuming I would be fortunate enough to have the same type of connection with as many if any others.

I am confident in my doctor. I am happy with my doctor & she knows my stubborness & when to call my bluff. All that is just as important IMHO as the numbers........

BTW You are the weird one Em, but I still agree with you LMAO!
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

I may be the weird one, but I'm not going to be all up in arms about numbers. I don't personally give half a d*mn about the best clinic or Warwick or whoever or any of that garbage.



Again, I may be weird, but I'm more concerned with PERSONAL CARE. If you're at a clinic with good numbers *and* you can get good personal care, then good for you. What I talk about here is more concerning clinics with good numbers and less-than-wonderful care.



While I understand people are going to be drawn to the best numbers, please do not forget about personal care. For yourself, for your children, for your spouse, whatever the case may be.



My clinic's numbers aren't the best, but they're not dead low, either. They're *just* above the national averages. And that is perfectly fine by me. Not only because the numbers are at least average, but also because I'd follow my current doc to just about any clinic.



I don't know, I know I'm one of a <u>VERY</u> few, but it just bugs me out that people get SOOOOOOO effing wrapped up in the numbers. Yes, you want good numbers. But guess the hell what, guys? CF is <b>progressive</b>. No matter where you go or how good your clinic is or whatever else, your numbers *ARE* going to go down at some point.



Quite frankly, as long as you're satisfied with your care... who gives a d*mn what the numbers are? I know a lot of you do. Just consider not putting so much of your opinions of various places on the numbers. I get a PFT and a sputum culture every time I go. I get blood work once a year, and a chest X ray once a year. Yale may not be the cleanest d*mn clinic, but like I said, I'd follow John just about anywhere.



Pay attention to your DOC as well as your clinic. Pay attention to PERSONAL CARE as well as the stupid numbers.



And do me a favor, no one jump up my @ss about this (I know, I'm asking a lot). I <i>know</i> why the numbers are important, I know all the crap involved. You don't need to tell me. I just don't see why people sacrifice personal care for numbers. That's all I'm trying to say here.</end quote></div>


For the first time I TOTALLY agree with you. I wouldnt up & leave my clinic because they arent at the top. The connection I have with every person involved in my care is soooooo important to me. I have known most/many of them for 30 years. All of them from the office staff to housekeeping/food service on the hospital floor have seen me be an annoying teenager, graduate high school, get married (twice) and have a baby. The thought of having to start the relationship connection again makes me sick to my stomach & that is assuming I would be fortunate enough to have the same type of connection with as many if any others.

I am confident in my doctor. I am happy with my doctor & she knows my stubborness & when to call my bluff. All that is just as important IMHO as the numbers........

BTW You are the weird one Em, but I still agree with you LMAO!
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

I may be the weird one, but I'm not going to be all up in arms about numbers. I don't personally give half a d*mn about the best clinic or Warwick or whoever or any of that garbage.



Again, I may be weird, but I'm more concerned with PERSONAL CARE. If you're at a clinic with good numbers *and* you can get good personal care, then good for you. What I talk about here is more concerning clinics with good numbers and less-than-wonderful care.



While I understand people are going to be drawn to the best numbers, please do not forget about personal care. For yourself, for your children, for your spouse, whatever the case may be.



My clinic's numbers aren't the best, but they're not dead low, either. They're *just* above the national averages. And that is perfectly fine by me. Not only because the numbers are at least average, but also because I'd follow my current doc to just about any clinic.



I don't know, I know I'm one of a <u>VERY</u> few, but it just bugs me out that people get SOOOOOOO effing wrapped up in the numbers. Yes, you want good numbers. But guess the hell what, guys? CF is <b>progressive</b>. No matter where you go or how good your clinic is or whatever else, your numbers *ARE* going to go down at some point.



Quite frankly, as long as you're satisfied with your care... who gives a d*mn what the numbers are? I know a lot of you do. Just consider not putting so much of your opinions of various places on the numbers. I get a PFT and a sputum culture every time I go. I get blood work once a year, and a chest X ray once a year. Yale may not be the cleanest d*mn clinic, but like I said, I'd follow John just about anywhere.



Pay attention to your DOC as well as your clinic. Pay attention to PERSONAL CARE as well as the stupid numbers.



And do me a favor, no one jump up my @ss about this (I know, I'm asking a lot). I <i>know</i> why the numbers are important, I know all the crap involved. You don't need to tell me. I just don't see why people sacrifice personal care for numbers. That's all I'm trying to say here.</end quote></div>


For the first time I TOTALLY agree with you. I wouldnt up & leave my clinic because they arent at the top. The connection I have with every person involved in my care is soooooo important to me. I have known most/many of them for 30 years. All of them from the office staff to housekeeping/food service on the hospital floor have seen me be an annoying teenager, graduate high school, get married (twice) and have a baby. The thought of having to start the relationship connection again makes me sick to my stomach & that is assuming I would be fortunate enough to have the same type of connection with as many if any others.

I am confident in my doctor. I am happy with my doctor & she knows my stubborness & when to call my bluff. All that is just as important IMHO as the numbers........

BTW You are the weird one Em, but I still agree with you LMAO!
 
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