Do you know where the "BEST" cf center is?
- Thread starter mltoliver
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Do you know where the "BEST
The Minnesota Cystic Fibrosis Centre is supposed to be one of the best (if not THE best). The main doc here developed the vest and the average age of patient there is 47 years not 36. Good eh? Try this link:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.med.umn.edu/peds/cfcenter/aboutus/home.html">http://www.med.umn.edu/peds/cfcenter/aboutus/home.html</a>
The Minnesota Cystic Fibrosis Centre is supposed to be one of the best (if not THE best). The main doc here developed the vest and the average age of patient there is 47 years not 36. Good eh? Try this link:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.med.umn.edu/peds/cfcenter/aboutus/home.html">http://www.med.umn.edu/peds/cfcenter/aboutus/home.html</a>
Mockingbird
New member
Do you know where the "BEST
I grew up with the Salt Lake City PCMC. That one's not bad, either. I know you want the best care for your daughter, but don't buy into the hype too much. The best doctor isn't necessarily the most aggressive. Sometimes we need doctors who will allow us to live a life away from the hospital a little. After all, if we only concentrate on our health and nothing else, then what's the point?
I grew up with the Salt Lake City PCMC. That one's not bad, either. I know you want the best care for your daughter, but don't buy into the hype too much. The best doctor isn't necessarily the most aggressive. Sometimes we need doctors who will allow us to live a life away from the hospital a little. After all, if we only concentrate on our health and nothing else, then what's the point?
LunarFlower
New member
Do you know where the
Well, here in Colorado, I've heard that (if you have a kid or teen w/ CF) The Childrens' Hospital is supposed to be pretty good.
Well, here in Colorado, I've heard that (if you have a kid or teen w/ CF) The Childrens' Hospital is supposed to be pretty good.
Emily65Roses
New member
Do you know where the
It depends a lot on what your definition of the "best care" is. I have gone to Yale New Haven (in CT) for 22 years so far and I really like it.
It depends a lot on what your definition of the "best care" is. I have gone to Yale New Haven (in CT) for 22 years so far and I really like it.
Do you know where the
I just picked up a notice from my CF clinic that was issues by the CFF regarding this ranking. It says that they do not rank CF centers for various reasons. Some of those reasons being the economic factor of the area in which the centers are. Those with higher Medicaid reimbursement might have lower numbers because if inability to get the necessary staffing &/or meds for the patients. Others factors are environmental. If you have a humid area versus a dry area the patients will show different levels of problems. IN addition to the physicians themselves & their overall approach on things. I understand wanting to have the best for the CFer in your life, but just because a center is "ranked" best doesnt mean its best for each person. I realize this is the "statistical" side of things, but so many factor go into what centers fits best for a patient that the statistics usually considered arent everything!
I just picked up a notice from my CF clinic that was issues by the CFF regarding this ranking. It says that they do not rank CF centers for various reasons. Some of those reasons being the economic factor of the area in which the centers are. Those with higher Medicaid reimbursement might have lower numbers because if inability to get the necessary staffing &/or meds for the patients. Others factors are environmental. If you have a humid area versus a dry area the patients will show different levels of problems. IN addition to the physicians themselves & their overall approach on things. I understand wanting to have the best for the CFer in your life, but just because a center is "ranked" best doesnt mean its best for each person. I realize this is the "statistical" side of things, but so many factor go into what centers fits best for a patient that the statistics usually considered arent everything!
Do you know where the
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>
oh they rank. and there's been pressure on them to release the rankings - so that's probably why they're coming out saying that they don't rank.
I know my CF center's ranking. they were willing to share the info with me.</end quote></div>
If this is true then the notice I picked up is completely a lie. I mean 100%. I better find it again & reread it before I tear the CFF apart, but my initial read said the opposite. I might have missed a word that can make a BIG difference. Thanks for the feedback, Amy!
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>
oh they rank. and there's been pressure on them to release the rankings - so that's probably why they're coming out saying that they don't rank.
I know my CF center's ranking. they were willing to share the info with me.</end quote></div>
If this is true then the notice I picked up is completely a lie. I mean 100%. I better find it again & reread it before I tear the CFF apart, but my initial read said the opposite. I might have missed a word that can make a BIG difference. Thanks for the feedback, Amy!
Do you know where the
as long as the centre is not really bad, should it make much difference as to where in the ranking list a centre appears. Surely if the centre is acredited, then it must be on the rank list high up. In Scotland I think we only have about 4 centres for children and ours i have to say is brilliant, it must make a difference having the dedicated staff who really care about the CFers, no matter where you stay.
as long as the centre is not really bad, should it make much difference as to where in the ranking list a centre appears. Surely if the centre is acredited, then it must be on the rank list high up. In Scotland I think we only have about 4 centres for children and ours i have to say is brilliant, it must make a difference having the dedicated staff who really care about the CFers, no matter where you stay.
Do you know where the
The CFF ranksed ACREDITED centers. So it's not that if a center is acredited that it must be a good center. No no no. The acredited centers are ranked.
Some centers don't seperate CFers by bacteria, whereas others do. Some don't get bone density scans every year, others do. Some make patients come in every 3 months regardless of health status and others don't. There are so many variables that go into the ranking - average age of death. BMI. Lots of things.
Some factors can be misleading. But overall, it's clear which centers are better and which aren't.
The CFF ranksed ACREDITED centers. So it's not that if a center is acredited that it must be a good center. No no no. The acredited centers are ranked.
Some centers don't seperate CFers by bacteria, whereas others do. Some don't get bone density scans every year, others do. Some make patients come in every 3 months regardless of health status and others don't. There are so many variables that go into the ranking - average age of death. BMI. Lots of things.
Some factors can be misleading. But overall, it's clear which centers are better and which aren't.
Do you know where the
I would have to be very cautious in judging a center by its ranking. There are things that are simple to judge such as those Amy pointed out: bone density scanning, separating patients by bacteria etc...
However average age of death statistically can be very misleading. Do they account for SES (social economic status), insurance coverage, state in which they are located? Minnesota is one of the healthiest states to live in, so perhaps that is part of the reason their life expectancy rate for CF is also higher.
Our center has publicized many of their individual rankings (i.e. nutritional status, Vitamin D testing) and I was pleased to see that they have improved in the recent year. However, I would be wary to judge an overall ranking unless all of the mitigating factors were somehow taken out.
Maria (mom to Sami, three years old w/cf)
I would have to be very cautious in judging a center by its ranking. There are things that are simple to judge such as those Amy pointed out: bone density scanning, separating patients by bacteria etc...
However average age of death statistically can be very misleading. Do they account for SES (social economic status), insurance coverage, state in which they are located? Minnesota is one of the healthiest states to live in, so perhaps that is part of the reason their life expectancy rate for CF is also higher.
Our center has publicized many of their individual rankings (i.e. nutritional status, Vitamin D testing) and I was pleased to see that they have improved in the recent year. However, I would be wary to judge an overall ranking unless all of the mitigating factors were somehow taken out.
Maria (mom to Sami, three years old w/cf)
thefrogprincess
New member
Do you know where the
Go to the CF Foundation web site to find a list of accredited CF centers, I think you can even search by state. www.cff.org
On the west coast Seattle CHildren's Hospital, the University of Washington (adult clinic) and Stanford are generally accepted as the best.
Go to the CF Foundation web site to find a list of accredited CF centers, I think you can even search by state. www.cff.org
On the west coast Seattle CHildren's Hospital, the University of Washington (adult clinic) and Stanford are generally accepted as the best.
Do you know where the "BEST
childrens hospital boston was really good, but then they got an out break of cepia or something... they never told me b/c i was too young, but i got switched to mass general boston
which was awesome b/c thye did such a good job with my comign ther. iwas quarenteened for like a year from alll the other patients, which meant i wasnt allowed to be in the waiting room with anyone else... which was reall ynice, adn the doctor never ran behind... oh i wish i was still in quarenteen! hahah! that sounds to funny
childrens hospital boston was really good, but then they got an out break of cepia or something... they never told me b/c i was too young, but i got switched to mass general boston
which was awesome b/c thye did such a good job with my comign ther. iwas quarenteened for like a year from alll the other patients, which meant i wasnt allowed to be in the waiting room with anyone else... which was reall ynice, adn the doctor never ran behind... oh i wish i was still in quarenteen! hahah! that sounds to funny
Do you know where the "BEST
I would imagine the reputation of a hospital would attrack the best drs,if a dr had a choice between say hicksville general and childrens hospital Boston, thats not to say that the smaller hospitals have less dedicated drs, they do , it comes down to resources at hospitals. Well that is how it seems to be in Scotland. Our local hospital, which serves about 150,000 people, has a childrens ward that operates from 9am to 5pm, no overnight admissions for kids, its maternity ward is nurse led, no consultants, well they come during the day. And our A&E is under threat for good measure. Thats Inverclyde Royal btw. Saying that our son CF team operate between this hospital and another 20 miles away, and they I have to say are brilliant, very dedicated. Sorry that turned into a bit of a rant about our hospitals.
craig
I would imagine the reputation of a hospital would attrack the best drs,if a dr had a choice between say hicksville general and childrens hospital Boston, thats not to say that the smaller hospitals have less dedicated drs, they do , it comes down to resources at hospitals. Well that is how it seems to be in Scotland. Our local hospital, which serves about 150,000 people, has a childrens ward that operates from 9am to 5pm, no overnight admissions for kids, its maternity ward is nurse led, no consultants, well they come during the day. And our A&E is under threat for good measure. Thats Inverclyde Royal btw. Saying that our son CF team operate between this hospital and another 20 miles away, and they I have to say are brilliant, very dedicated. Sorry that turned into a bit of a rant about our hospitals.
craig
Do you know where the "BEST
I think the key is how proactive the facility is and how good are they about germ protocol. Are you in a community waiting room? Do they stress proper lung care -- cpt? do they do cultures regularly to see what's growing? Do they TREAT what is growing. Some hospitals STILL have CFers sharing rooms with other CFers. Not sure if that's the case in the states at accredited facilities, but have heard that it is in other countries. In terms of the U of M being so highly ranked, a friend of mine's newly diagnosed grandchild goes there and they weren't informed about cross contamination and she said they were horrified to find out after their clinic appointment, after their child spend most of the day playing in a community waiting room/playroom with other children. L
I think the key is how proactive the facility is and how good are they about germ protocol. Are you in a community waiting room? Do they stress proper lung care -- cpt? do they do cultures regularly to see what's growing? Do they TREAT what is growing. Some hospitals STILL have CFers sharing rooms with other CFers. Not sure if that's the case in the states at accredited facilities, but have heard that it is in other countries. In terms of the U of M being so highly ranked, a friend of mine's newly diagnosed grandchild goes there and they weren't informed about cross contamination and she said they were horrified to find out after their clinic appointment, after their child spend most of the day playing in a community waiting room/playroom with other children. L
Do you know where the "BEST
Bumping this back up to the top. I heard from my CFF person that they will soon be releasing the rankings of the centers. (And she said that everyone is nervous about it too.) Sounds like they will share rankings on various facets... nutrition, lung function, etc.
By the way... I missed the last post on this list back in May... if the person is still around asking about Iowa clinics... you can PM me at cftwins. We use U of I.
Stacy
(Mom to maren and berne -- 18 mo. of twins *can't believe that they are so old!!*, both with CF)
Bumping this back up to the top. I heard from my CFF person that they will soon be releasing the rankings of the centers. (And she said that everyone is nervous about it too.) Sounds like they will share rankings on various facets... nutrition, lung function, etc.
By the way... I missed the last post on this list back in May... if the person is still around asking about Iowa clinics... you can PM me at cftwins. We use U of I.
Stacy
(Mom to maren and berne -- 18 mo. of twins *can't believe that they are so old!!*, both with CF)
Do you know where the "BEST
Bumping this back up to the top. I heard from my CFF person that they will soon be releasing the rankings of the centers. (And she said that everyone is nervous about it too.) Sounds like they will share rankings on various facets... nutrition, lung function, etc.
By the way... I missed the last post on this list back in May... if the person is still around asking about Iowa clinics... you can PM me at cftwins. We use U of I.
Stacy
(Mom to maren and berne -- 18 mo. of twins *can't believe that they are so old!!*, both with CF)
Bumping this back up to the top. I heard from my CFF person that they will soon be releasing the rankings of the centers. (And she said that everyone is nervous about it too.) Sounds like they will share rankings on various facets... nutrition, lung function, etc.
By the way... I missed the last post on this list back in May... if the person is still around asking about Iowa clinics... you can PM me at cftwins. We use U of I.
Stacy
(Mom to maren and berne -- 18 mo. of twins *can't believe that they are so old!!*, both with CF)