Best CF Centers

[Mommafirst]

You know, you just are going to have to find a center with doctors you like and trust. There is no overarching right and wrong here, and while statistics don't lie there is a lot that goes into getting them that is not apparant. For example, some centers might not allow a "non-compliant" patient to continue to be treated, while others would find this practice immoral. As a result, the clinics that discharge patients that don't follow protocol might have higher stats, but its not because they are doing everything right, its because they are only counting the patients that are doing it their way.

I just returned from the national CF conference and sat in a session where they basically said that despite all they know about treating CF exacerbations they still "don't know jack". There are LOTS of inconsistencies across the board (treat inpatient vs. outpatient; orals vs. IVs; continuous IVs vs discrete dosing; inhaled stops during IVs vs. keep inhaled abx going during IVs)...the list goes on and on and while the researchers and doctors are trying to determine best practices, there isn't enough evidence to prove success in one vs. the other.

For me, our center has moderately high outcome percentages...but what sticks with me is their transparancy about what they feel they are doing right and where they feel they can improve. They are always looking to improve and are willing to hear criticism. And to me, this is the kid of place I want to treat my daughter. You'll have to find the fit that works for you and your CF patient.

 

[Mommafirst]

You know, you just are going to have to find a center with doctors you like and trust. There is no overarching right and wrong here, and while statistics don't lie there is a lot that goes into getting them that is not apparant. For example, some centers might not allow a "non-compliant" patient to continue to be treated, while others would find this practice immoral. As a result, the clinics that discharge patients that don't follow protocol might have higher stats, but its not because they are doing everything right, its because they are only counting the patients that are doing it their way.

I just returned from the national CF conference and sat in a session where they basically said that despite all they know about treating CF exacerbations they still "don't know jack". There are LOTS of inconsistencies across the board (treat inpatient vs. outpatient; orals vs. IVs; continuous IVs vs discrete dosing; inhaled stops during IVs vs. keep inhaled abx going during IVs)...the list goes on and on and while the researchers and doctors are trying to determine best practices, there isn't enough evidence to prove success in one vs. the other.

For me, our center has moderately high outcome percentages...but what sticks with me is their transparancy about what they feel they are doing right and where they feel they can improve. They are always looking to improve and are willing to hear criticism. And to me, this is the kid of place I want to treat my daughter. You'll have to find the fit that works for you and your CF patient.

 

[Mommafirst]

You know, you just are going to have to find a center with doctors you like and trust. There is no overarching right and wrong here, and while statistics don't lie there is a lot that goes into getting them that is not apparant. For example, some centers might not allow a "non-compliant" patient to continue to be treated, while others would find this practice immoral. As a result, the clinics that discharge patients that don't follow protocol might have higher stats, but its not because they are doing everything right, its because they are only counting the patients that are doing it their way.
<br />
<br />I just returned from the national CF conference and sat in a session where they basically said that despite all they know about treating CF exacerbations they still "don't know jack". There are LOTS of inconsistencies across the board (treat inpatient vs. outpatient; orals vs. IVs; continuous IVs vs discrete dosing; inhaled stops during IVs vs. keep inhaled abx going during IVs)...the list goes on and on and while the researchers and doctors are trying to determine best practices, there isn't enough evidence to prove success in one vs. the other.
<br />
<br />For me, our center has moderately high outcome percentages...but what sticks with me is their transparancy about what they feel they are doing right and where they feel they can improve. They are always looking to improve and are willing to hear criticism. And to me, this is the kid of place I want to treat my daughter. You'll have to find the fit that works for you and your CF patient.

 

[LouLou]

I agree with Heather but also want to say I think we could have a fairly interesting discussion about specific clinics and help novice parents figure out which is the better.

And to me the #1 most important thing in a clinic is that each time a child has a cough or other problem, the doctor is involved in getting to the bottom of how to fix it even if the first approach doesn't work. Persistance and agressive are two words that should describe all of our centers.

 

[LouLou]

I agree with Heather but also want to say I think we could have a fairly interesting discussion about specific clinics and help novice parents figure out which is the better.

And to me the #1 most important thing in a clinic is that each time a child has a cough or other problem, the doctor is involved in getting to the bottom of how to fix it even if the first approach doesn't work. Persistance and agressive are two words that should describe all of our centers.

 

[LouLou]

I agree with Heather but also want to say I think we could have a fairly interesting discussion about specific clinics and help novice parents figure out which is the better.

And to me the #1 most important thing in a clinic is that each time a child has a cough or other problem, the doctor is involved in getting to the bottom of how to fix it even if the first approach doesn't work. Persistance and agressive are two words that should describe all of our centers.

 

[Gammaw]

First, Heather poses a great question. I worry about her suggestion that the CF Centers are not reporting the same information. I would think that answer is available. I will try to track it down - perhaps through the CFF. I not only hope the CF centers don't refuse patients, but I also hope the integrity and reliability of the Patient Registry isn't so severely compromised. If it were, that would explain a lot.
Secondly, I can only begin to imagine the problems trying to "compare" patients and their histories to account for differences. But if certain Centers consistently show higher Life Expectancy than others, and reporting is similarly based, then there is something there to look at and perhaps learn from. Isn't that the point of the registry? Which is why I wonder if some comparison of protocols already exist, if they are simply not reported, etc.
Third, I admit to being reluctant to share information about Center approaches by name in this Forum. I'm not sure why, but I have to think about that one. Although the information would certainly be valuable,

 

[Gammaw]

First, Heather poses a great question. I worry about her suggestion that the CF Centers are not reporting the same information. I would think that answer is available. I will try to track it down - perhaps through the CFF. I not only hope the CF centers don't refuse patients, but I also hope the integrity and reliability of the Patient Registry isn't so severely compromised. If it were, that would explain a lot.
Secondly, I can only begin to imagine the problems trying to "compare" patients and their histories to account for differences. But if certain Centers consistently show higher Life Expectancy than others, and reporting is similarly based, then there is something there to look at and perhaps learn from. Isn't that the point of the registry? Which is why I wonder if some comparison of protocols already exist, if they are simply not reported, etc.
Third, I admit to being reluctant to share information about Center approaches by name in this Forum. I'm not sure why, but I have to think about that one. Although the information would certainly be valuable,

 

[Gammaw]

First, Heather poses a great question. I worry about her suggestion that the CF Centers are not reporting the same information. I would think that answer is available. I will try to track it down - perhaps through the CFF. I not only hope the CF centers don't refuse patients, but I also hope the integrity and reliability of the Patient Registry isn't so severely compromised. If it were, that would explain a lot.
Secondly, I can only begin to imagine the problems trying to "compare" patients and their histories to account for differences. But if certain Centers consistently show higher Life Expectancy than others, and reporting is similarly based, then there is something there to look at and perhaps learn from. Isn't that the point of the registry? Which is why I wonder if some comparison of protocols already exist, if they are simply not reported, etc.
Third, I admit to being reluctant to share information about Center approaches by name in this Forum. I'm not sure why, but I have to think about that one. Although the information would certainly be valuable,

 

[JennyCoulon]

<P>We go to the University of Nebraska Medical Center which actually just switched to a brand new speciality clinic at Children's Hospital in Omaha. It took some getting used to Childrens and I still do not like it that the people I have always talked to aren't the ones that answer my calls and know my situation and kids. I guess this is something that I am going to have to learn to live with my that doesn't mean I like it....It is hard for things to change when you have been so used to one consistant thing for 11 years. It is a great facility and I think that they are 100% proactive when treating CF.....</P>
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[JennyCoulon]

<P>We go to the University of Nebraska Medical Center which actually just switched to a brand new speciality clinic at Children's Hospital in Omaha. It took some getting used to Childrens and I still do not like it that the people I have always talked to aren't the ones that answer my calls and know my situation and kids. I guess this is something that I am going to have to learn to live with my that doesn't mean I like it....It is hard for things to change when you have been so used to one consistant thing for 11 years. It is a great facility and I think that they are 100% proactive when treating CF.....</P>
<P></P>

 

[JennyCoulon]

<P>We go to the University of Nebraska Medical Center which actually just switched to a brand new speciality clinic at Children's Hospital in Omaha. It took some getting used to Childrens and I still do not like it that the people I have always talked to aren't the ones that answer my calls and know my situation and kids. I guess this is something that I am going to have to learn to live with my that doesn't mean I like it....It is hard for things to change when you have been so used to one consistant thing for 11 years. It is a great facility and I think that they are 100% proactive when treating CF.....</P>
<P></P>

 

[Gammaw]

Jenny, We used to go there as well. Up until about 4 years ago. Did they change Drs? But we were always at Childrens Hopital for Clinic Visits. What do they do that you consider proactive? Those are the kinds of things I see as potentially being a Best Practice? I don't remember any masking in the waiting room or exam rooms. I remember the waiting room being very crowded and close. I liked the way all the health care providers stopped in the exam room at some point in the visit. But they didn't recommend a vest until after 4 years old I think.

 

[Gammaw]

Jenny, We used to go there as well. Up until about 4 years ago. Did they change Drs? But we were always at Childrens Hopital for Clinic Visits. What do they do that you consider proactive? Those are the kinds of things I see as potentially being a Best Practice? I don't remember any masking in the waiting room or exam rooms. I remember the waiting room being very crowded and close. I liked the way all the health care providers stopped in the exam room at some point in the visit. But they didn't recommend a vest until after 4 years old I think.

 

[Gammaw]

Jenny, We used to go there as well. Up until about 4 years ago. Did they change Drs? But we were always at Childrens Hopital for Clinic Visits. What do they do that you consider proactive? Those are the kinds of things I see as potentially being a Best Practice? I don't remember any masking in the waiting room or exam rooms. I remember the waiting room being very crowded and close. I liked the way all the health care providers stopped in the exam room at some point in the visit. But they didn't recommend a vest until after 4 years old I think.

 

[UNCLoveCF]

Do not assume just because one center has higher life expectancy than others that the center has better CF treatment. Every center has the same access to drugs available by prescription. However, some centers accept much sicker patients than others; and this skews the centers CFF registry data. For example, UNC has an excellent CF center with some of the best researchers and CF specialists in the country, but because UNC accepts very sick patients--including those with B. Cepacia and pan-resistant bacterias for transplantation, the centers statistics are affected. I do know at the 2011 CFF National CF Conference only four CF centers were honored for their work in CF (innovacation/researcher) and UNC CF Center was one of the four centers honored. <br>Every center, including the best, has their strengths and weaknesses. A CF team is only as strong as the weakest link in CF care. The benefits of going to a CF center heavily funded with research grants is that you'll have access to research studies and medications quicker than centers without these grants. Hence, the reason I have been on Hypertonic Saline for 10+ years when it took centers around the country to start prescribing Hypertonic to patients. The downside of a research center is that you may be paired up with a Pulmonary Fellow for outpatient care, in which case your Fellow will change every few years so you are unable to establish a long-term relationship. Another downside of bigger CF centers is that they are typically teaching hospitals and you have to deal with Residents who know nothing more about CF than outdated textbook material in biology books--and a Resident who has absolutely no desire to treat CF patients in the future. <br>

 

[UNCLoveCF]

Do not assume just because one center has higher life expectancy than others that the center has better CF treatment. Every center has the same access to drugs available by prescription. However, some centers accept much sicker patients than others; and this skews the centers CFF registry data. For example, UNC has an excellent CF center with some of the best researchers and CF specialists in the country, but because UNC accepts very sick patients--including those with B. Cepacia and pan-resistant bacterias for transplantation, the centers statistics are affected. I do know at the 2011 CFF National CF Conference only four CF centers were honored for their work in CF (innovacation/researcher) and UNC CF Center was one of the four centers honored. <br>Every center, including the best, has their strengths and weaknesses. A CF team is only as strong as the weakest link in CF care. The benefits of going to a CF center heavily funded with research grants is that you'll have access to research studies and medications quicker than centers without these grants. Hence, the reason I have been on Hypertonic Saline for 10+ years when it took centers around the country to start prescribing Hypertonic to patients. The downside of a research center is that you may be paired up with a Pulmonary Fellow for outpatient care, in which case your Fellow will change every few years so you are unable to establish a long-term relationship. Another downside of bigger CF centers is that they are typically teaching hospitals and you have to deal with Residents who know nothing more about CF than outdated textbook material in biology books--and a Resident who has absolutely no desire to treat CF patients in the future. <br>

 

[UNCLoveCF]

Do not assume just because one center has higher life expectancy than others that the center has better CF treatment. Every center has the same access to drugs available by prescription. However, some centers accept much sicker patients than others; and this skews the centers CFF registry data. For example, UNC has an excellent CF center with some of the best researchers and CF specialists in the country, but because UNC accepts very sick patients--including those with B. Cepacia and pan-resistant bacterias for transplantation, the centers statistics are affected. I do know at the 2011 CFF National CF Conference only four CF centers were honored for their work in CF (innovacation/researcher) and UNC CF Center was one of the four centers honored. <br>Every center, including the best, has their strengths and weaknesses. A CF team is only as strong as the weakest link in CF care. The benefits of going to a CF center heavily funded with research grants is that you'll have access to research studies and medications quicker than centers without these grants. Hence, the reason I have been on Hypertonic Saline for 10+ years when it took centers around the country to start prescribing Hypertonic to patients. The downside of a research center is that you may be paired up with a Pulmonary Fellow for outpatient care, in which case your Fellow will change every few years so you are unable to establish a long-term relationship. Another downside of bigger CF centers is that they are typically teaching hospitals and you have to deal with Residents who know nothing more about CF than outdated textbook material in biology books--and a Resident who has absolutely no desire to treat CF patients in the future. <br>

 

[UNCLoveCF]

I also want to add that average FEV1 at a CF center is not as important as one would like to think. My FEV1 looks good on paper, yet I am very sick from my CF. I cough up blood regularly, have ran a chronic low grade fever since 2009, have experienced massive hemoptysis, and feel unwell 90% of the time.

 

[TleighsHusband]

It would also be interesting to see how much location has anything to do with the health of CFers and not just what clinic they go. Obviously some clinics will be better than others, but I wonder what the climate/air conditions of where they are located also have a major factor in the health of the patients. We lived in four very different climates which I believe had major impacts on Tiffany's health and breathing -- I know this is off topic a little bit but my main point is that there is also more to the discussion than just the clinic practices. We were thankful for or docs who were aggressive with treatment although I wish they would have pushed exercise more.