CF Centers/Clinics

[Jenica]

I understand that whether a center is a transplant center or not, patient compliance, etc. can affect the adult numbers, but what about the numbers for pediatrics? I'm not sure that compliance or transplants come into play there at all. The center we visit for my daughter is ranked lower than the two other Boston accredited centers in every category, which is obviously worrisome. We've been very happy with the care our daughter has received, but when I see that the FEV1 at our center is 82.3 for pediatrics compared to 92.4 and 84.6 at the other two clinics, I can't help but wonder if we should stay put or jump ship to a clinic with significantly higher numbers.

 

[Jenica]

I understand that whether a center is a transplant center or not, patient compliance, etc. can affect the adult numbers, but what about the numbers for pediatrics? I'm not sure that compliance or transplants come into play there at all. The center we visit for my daughter is ranked lower than the two other Boston accredited centers in every category, which is obviously worrisome. We've been very happy with the care our daughter has received, but when I see that the FEV1 at our center is 82.3 for pediatrics compared to 92.4 and 84.6 at the other two clinics, I can't help but wonder if we should stay put or jump ship to a clinic with significantly higher numbers.

 

[NoExcuses]

I don't blame you....

Maybe visit the other centers for a consult (I went to visit Warwick in Minnesota for a consult) to see what they're doing differently. Ask what meds patients are on. What their philosophy is on preventative care. How do they treat flare ups? Do they do educational videos/pamphlets for parents/children?

If a lot is different, maybe it's time for a change..... There's certainly no harm in doing some investigation to find out what's up.

<u>Afterall, who has more of an interest in Ellie's health, than you? </u>

 

[NoExcuses]

I don't blame you....

Maybe visit the other centers for a consult (I went to visit Warwick in Minnesota for a consult) to see what they're doing differently. Ask what meds patients are on. What their philosophy is on preventative care. How do they treat flare ups? Do they do educational videos/pamphlets for parents/children?

If a lot is different, maybe it's time for a change..... There's certainly no harm in doing some investigation to find out what's up.

<u>Afterall, who has more of an interest in Ellie's health, than you? </u>

 

[NoExcuses]

I don't blame you....

Maybe visit the other centers for a consult (I went to visit Warwick in Minnesota for a consult) to see what they're doing differently. Ask what meds patients are on. What their philosophy is on preventative care. How do they treat flare ups? Do they do educational videos/pamphlets for parents/children?

If a lot is different, maybe it's time for a change..... There's certainly no harm in doing some investigation to find out what's up.

<u>Afterall, who has more of an interest in Ellie's health, than you? </u>

 

[getahobby]

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

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



Like somebody else said; don't take these statistics too seriously. Larger centers are often "penalized" in these statistics for a couple of reasons. For example, if a center is a transplant center then the numbers are going to take a hit from the "sicker" patients. Also, sometimes other centers will send their sicker patients to a larger center that is nearby to see if that larger center can be more help.







The numbers are interesting though.</end quote></div>





But don't forget.... centers like Minnesota have an average FEV1 of 98% for their pediatric patients. And their patients live the longest out of any other center in the US.



Give it a few years.... Minnesota is going to continue to produce these kids with CF who have normal lung functions and pretty soon their life expectancy is going to be decades ahead of any other center. People will look back and wonder what in the world happened? How did they get so far ahead....



There is a bell curve in care. And all of us want to be apart of a clinic that's on the forefront.....



So you can always put different explanations to #s.... but average age of death and FEV1, it's hard to debate that.</end quote></div>

All good points. I do think it is interesting how good of compliance the Minnesota clinic has. I think good compliance leads to good numbers and good numbers leads somewhat to good compliance. They begin to feed off each other. My clinic shows a compliance of 40% for adults. That is absolutely ridiculous if you ask me.

Where are you getting the numbers for average age of death versus other clinics for the Minnesota clinic? Does it detail out the numbers for other clinics?

 

[getahobby]

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

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



Like somebody else said; don't take these statistics too seriously. Larger centers are often "penalized" in these statistics for a couple of reasons. For example, if a center is a transplant center then the numbers are going to take a hit from the "sicker" patients. Also, sometimes other centers will send their sicker patients to a larger center that is nearby to see if that larger center can be more help.







The numbers are interesting though.</end quote></div>





But don't forget.... centers like Minnesota have an average FEV1 of 98% for their pediatric patients. And their patients live the longest out of any other center in the US.



Give it a few years.... Minnesota is going to continue to produce these kids with CF who have normal lung functions and pretty soon their life expectancy is going to be decades ahead of any other center. People will look back and wonder what in the world happened? How did they get so far ahead....



There is a bell curve in care. And all of us want to be apart of a clinic that's on the forefront.....



So you can always put different explanations to #s.... but average age of death and FEV1, it's hard to debate that.</end quote></div>

All good points. I do think it is interesting how good of compliance the Minnesota clinic has. I think good compliance leads to good numbers and good numbers leads somewhat to good compliance. They begin to feed off each other. My clinic shows a compliance of 40% for adults. That is absolutely ridiculous if you ask me.

Where are you getting the numbers for average age of death versus other clinics for the Minnesota clinic? Does it detail out the numbers for other clinics?

 

[getahobby]

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

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



Like somebody else said; don't take these statistics too seriously. Larger centers are often "penalized" in these statistics for a couple of reasons. For example, if a center is a transplant center then the numbers are going to take a hit from the "sicker" patients. Also, sometimes other centers will send their sicker patients to a larger center that is nearby to see if that larger center can be more help.







The numbers are interesting though.</end quote></div>





But don't forget.... centers like Minnesota have an average FEV1 of 98% for their pediatric patients. And their patients live the longest out of any other center in the US.



Give it a few years.... Minnesota is going to continue to produce these kids with CF who have normal lung functions and pretty soon their life expectancy is going to be decades ahead of any other center. People will look back and wonder what in the world happened? How did they get so far ahead....



There is a bell curve in care. And all of us want to be apart of a clinic that's on the forefront.....



So you can always put different explanations to #s.... but average age of death and FEV1, it's hard to debate that.</end quote></div>

All good points. I do think it is interesting how good of compliance the Minnesota clinic has. I think good compliance leads to good numbers and good numbers leads somewhat to good compliance. They begin to feed off each other. My clinic shows a compliance of 40% for adults. That is absolutely ridiculous if you ask me.

Where are you getting the numbers for average age of death versus other clinics for the Minnesota clinic? Does it detail out the numbers for other clinics?

 

[Scarlett81]

the compliance factor is huge. I'm a fan of Dr. warwick in Minesota and his methods-but a factor in why their numbers are so great is b/c he will dump patients that aren't compliant. I'm not debating that-thats his right of course. I'd be mad if I was devoting my life to something and the patients didn't give a crap. But you have to consider that when looking at numbers. If he dumps patients that aren' doing the work-of course that will average in the success of his numbers.

 

[Scarlett81]

the compliance factor is huge. I'm a fan of Dr. warwick in Minesota and his methods-but a factor in why their numbers are so great is b/c he will dump patients that aren't compliant. I'm not debating that-thats his right of course. I'd be mad if I was devoting my life to something and the patients didn't give a crap. But you have to consider that when looking at numbers. If he dumps patients that aren' doing the work-of course that will average in the success of his numbers.

 

[Scarlett81]

the compliance factor is huge. I'm a fan of Dr. warwick in Minesota and his methods-but a factor in why their numbers are so great is b/c he will dump patients that aren't compliant. I'm not debating that-thats his right of course. I'd be mad if I was devoting my life to something and the patients didn't give a crap. But you have to consider that when looking at numbers. If he dumps patients that aren' doing the work-of course that will average in the success of his numbers.

 

[getahobby]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Scarlett81</b></i>

the compliance factor is huge. I'm a fan of Dr. warwick in Minesota and his methods-but a factor in why their numbers are so great is b/c he will dump patients that aren't compliant. I'm not debating that-thats his right of course. I'd be mad if I was devoting my life to something and the patients didn't give a crap. But you have to consider that when looking at numbers. If he dumps patients that aren' doing the work-of course that will average in the success of his numbers.</end quote></div>

What do you mean by "dump"? Kick them to another doctor in his clinic or kick them to a different clinic?

 

[getahobby]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Scarlett81</b></i>

the compliance factor is huge. I'm a fan of Dr. warwick in Minesota and his methods-but a factor in why their numbers are so great is b/c he will dump patients that aren't compliant. I'm not debating that-thats his right of course. I'd be mad if I was devoting my life to something and the patients didn't give a crap. But you have to consider that when looking at numbers. If he dumps patients that aren' doing the work-of course that will average in the success of his numbers.</end quote></div>

What do you mean by "dump"? Kick them to another doctor in his clinic or kick them to a different clinic?

 

[getahobby]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Scarlett81</b></i>

the compliance factor is huge. I'm a fan of Dr. warwick in Minesota and his methods-but a factor in why their numbers are so great is b/c he will dump patients that aren't compliant. I'm not debating that-thats his right of course. I'd be mad if I was devoting my life to something and the patients didn't give a crap. But you have to consider that when looking at numbers. If he dumps patients that aren' doing the work-of course that will average in the success of his numbers.</end quote></div>

What do you mean by "dump"? Kick them to another doctor in his clinic or kick them to a different clinic?

 

[Scarlett81]

Sorry I worked in a doctors office too long...
I guess dump sounds well, mean. But what I mean is they'll tell the patient they no longer will treat them. Then its up to the patient to find another doctor on their own.
The problem this creates for patients is that if they don't have another center nearby or doc nearby to see sometimes they'll just give up and not bother to find one, or settle on a not so good one. Of course I don't agree with that logic-I believe in taking responsibility for your disease and being compliant in the first place. But I'm just relaying what goes on...and you can't deny it doesn't go on. Everyone, every clinic in the cf community knows that certain centers will do this to keep their rating/numbers good and b/c they only want to treat compliant patients. So some centers get a bad rap with low ratings b/c they take any patient (even non compliant ones that don't do their treatments and don't care), when they're actually good centers.

 

[Scarlett81]

Sorry I worked in a doctors office too long...
I guess dump sounds well, mean. But what I mean is they'll tell the patient they no longer will treat them. Then its up to the patient to find another doctor on their own.
The problem this creates for patients is that if they don't have another center nearby or doc nearby to see sometimes they'll just give up and not bother to find one, or settle on a not so good one. Of course I don't agree with that logic-I believe in taking responsibility for your disease and being compliant in the first place. But I'm just relaying what goes on...and you can't deny it doesn't go on. Everyone, every clinic in the cf community knows that certain centers will do this to keep their rating/numbers good and b/c they only want to treat compliant patients. So some centers get a bad rap with low ratings b/c they take any patient (even non compliant ones that don't do their treatments and don't care), when they're actually good centers.

 

[Scarlett81]

Sorry I worked in a doctors office too long...
I guess dump sounds well, mean. But what I mean is they'll tell the patient they no longer will treat them. Then its up to the patient to find another doctor on their own.
The problem this creates for patients is that if they don't have another center nearby or doc nearby to see sometimes they'll just give up and not bother to find one, or settle on a not so good one. Of course I don't agree with that logic-I believe in taking responsibility for your disease and being compliant in the first place. But I'm just relaying what goes on...and you can't deny it doesn't go on. Everyone, every clinic in the cf community knows that certain centers will do this to keep their rating/numbers good and b/c they only want to treat compliant patients. So some centers get a bad rap with low ratings b/c they take any patient (even non compliant ones that don't do their treatments and don't care), when they're actually good centers.

 

[getahobby]

For doctors to do this for the "numbers" is ridiculous. I understand they are busy people and a non-compliant patient is basically wasting their time but I can't see a doctor telling a CF patient, albeit a non-compliant one, that they need to go find another doctor and/or clinic. You can't dump all the bad patients and then yell and point to your good numbers. I would say many (most???) non-compliant patients come to a realization at some point that they need to take care of themselves.

I was non-compliant for a good portion of my late teens. Luckily it had absolutely no affect on my health. I am now super-compliant. The subject of me finding another doctor and/or clinic never even came up in my visits that I did go to. Maybe this is why my clinic's compliancy numbers are so low <img src="i/expressions/face-icon-small-smile.gif" border="0">

Has anybody here ever been "dumped" by a CF doctor?

 

[getahobby]

For doctors to do this for the "numbers" is ridiculous. I understand they are busy people and a non-compliant patient is basically wasting their time but I can't see a doctor telling a CF patient, albeit a non-compliant one, that they need to go find another doctor and/or clinic. You can't dump all the bad patients and then yell and point to your good numbers. I would say many (most???) non-compliant patients come to a realization at some point that they need to take care of themselves.

I was non-compliant for a good portion of my late teens. Luckily it had absolutely no affect on my health. I am now super-compliant. The subject of me finding another doctor and/or clinic never even came up in my visits that I did go to. Maybe this is why my clinic's compliancy numbers are so low <img src="i/expressions/face-icon-small-smile.gif" border="0">

Has anybody here ever been "dumped" by a CF doctor?

 

[getahobby]

For doctors to do this for the "numbers" is ridiculous. I understand they are busy people and a non-compliant patient is basically wasting their time but I can't see a doctor telling a CF patient, albeit a non-compliant one, that they need to go find another doctor and/or clinic. You can't dump all the bad patients and then yell and point to your good numbers. I would say many (most???) non-compliant patients come to a realization at some point that they need to take care of themselves.

I was non-compliant for a good portion of my late teens. Luckily it had absolutely no affect on my health. I am now super-compliant. The subject of me finding another doctor and/or clinic never even came up in my visits that I did go to. Maybe this is why my clinic's compliancy numbers are so low <img src="i/expressions/face-icon-small-smile.gif" border="0">

Has anybody here ever been "dumped" by a CF doctor?