T
tarheel
Guest
Oh- no specific data will be released when I make the general post. Thus far, I am planning to announce ranges from other centers (by regions maybe?) and ranges from what Minneapolis releases.
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rubyroselee
New member
1. Rainbow Babies & Childrens-University Hospitals of Cleveland
2. 1981
3. double DF508
4. When I left peds in 1999 it was about 75%, now it's around 95%
2. 1981
3. double DF508
4. When I left peds in 1999 it was about 75%, now it's around 95%
rubyroselee
New member
1. Rainbow Babies & Childrens-University Hospitals of Cleveland
2. 1981
3. double DF508
4. When I left peds in 1999 it was about 75%, now it's around 95%
2. 1981
3. double DF508
4. When I left peds in 1999 it was about 75%, now it's around 95%
rubyroselee
New member
1. Rainbow Babies & Childrens-University Hospitals of Cleveland
<br />
<br />2. 1981
<br />
<br />3. double DF508
<br />
<br />4. When I left peds in 1999 it was about 75%, now it's around 95%
<br />
<br />2. 1981
<br />
<br />3. double DF508
<br />
<br />4. When I left peds in 1999 it was about 75%, now it's around 95%
BaylorCrew07
New member
1. Where did you primarily recieve your first 18 years of CF care?
N/A - not dx until age 20, but was tested/treated as a newborn at TX Children's in Houston (tests were inconclusive)
2. When were you born?
November 1984
3. What are your mutations?
G542X & R117H
4. What was your FEV1 %pred when you left your children's center for adult care? What is it now?
It's always been over 100%, dropped slightly recently (ie - prev 116%, now 105%)
N/A - not dx until age 20, but was tested/treated as a newborn at TX Children's in Houston (tests were inconclusive)
2. When were you born?
November 1984
3. What are your mutations?
G542X & R117H
4. What was your FEV1 %pred when you left your children's center for adult care? What is it now?
It's always been over 100%, dropped slightly recently (ie - prev 116%, now 105%)
BaylorCrew07
New member
1. Where did you primarily recieve your first 18 years of CF care?
N/A - not dx until age 20, but was tested/treated as a newborn at TX Children's in Houston (tests were inconclusive)
2. When were you born?
November 1984
3. What are your mutations?
G542X & R117H
4. What was your FEV1 %pred when you left your children's center for adult care? What is it now?
It's always been over 100%, dropped slightly recently (ie - prev 116%, now 105%)
N/A - not dx until age 20, but was tested/treated as a newborn at TX Children's in Houston (tests were inconclusive)
2. When were you born?
November 1984
3. What are your mutations?
G542X & R117H
4. What was your FEV1 %pred when you left your children's center for adult care? What is it now?
It's always been over 100%, dropped slightly recently (ie - prev 116%, now 105%)
BaylorCrew07
New member
1. Where did you primarily recieve your first 18 years of CF care?
<br />N/A - not dx until age 20, but was tested/treated as a newborn at TX Children's in Houston (tests were inconclusive)
<br />
<br />2. When were you born?
<br />November 1984
<br />
<br />3. What are your mutations?
<br />G542X & R117H
<br />
<br />4. What was your FEV1 %pred when you left your children's center for adult care? What is it now?
<br />It's always been over 100%, dropped slightly recently (ie - prev 116%, now 105%)
<br />N/A - not dx until age 20, but was tested/treated as a newborn at TX Children's in Houston (tests were inconclusive)
<br />
<br />2. When were you born?
<br />November 1984
<br />
<br />3. What are your mutations?
<br />G542X & R117H
<br />
<br />4. What was your FEV1 %pred when you left your children's center for adult care? What is it now?
<br />It's always been over 100%, dropped slightly recently (ie - prev 116%, now 105%)
T
tarheel
Guest
Thanks for all the data so far. This along with the data from the transplant forum is really helping. I wish that this data was more accessible in terms of real numbers, not just averages. My center now lists data for mean FEV1 in "children 6 to 17" as 85% pred. However, "adults 18 and over" drops to 50%. When I asked my doc the other day what he guessed the average FEV1 of a patient around my age he sees is, he said around 55%. This is all so puzzling- and only leads to the question of why do some centers have results leaps and bounds ahead of others when every doctor and nurse on the team cares just as much about the patients?
T
tarheel
Guest
Thanks for all the data so far. This along with the data from the transplant forum is really helping. I wish that this data was more accessible in terms of real numbers, not just averages. My center now lists data for mean FEV1 in "children 6 to 17" as 85% pred. However, "adults 18 and over" drops to 50%. When I asked my doc the other day what he guessed the average FEV1 of a patient around my age he sees is, he said around 55%. This is all so puzzling- and only leads to the question of why do some centers have results leaps and bounds ahead of others when every doctor and nurse on the team cares just as much about the patients?
T
tarheel
Guest
Thanks for all the data so far. This along with the data from the transplant forum is really helping. I wish that this data was more accessible in terms of real numbers, not just averages. My center now lists data for mean FEV1 in "children 6 to 17" as 85% pred. However, "adults 18 and over" drops to 50%. When I asked my doc the other day what he guessed the average FEV1 of a patient around my age he sees is, he said around 55%. This is all so puzzling- and only leads to the question of why do some centers have results leaps and bounds ahead of others when every doctor and nurse on the team cares just as much about the patients?
<div class="FTQUOTE"><begin quote>and only leads to the question of why do some centers have results leaps and bounds ahead of others when every doctor and nurse on the team cares just as much about the patients?</end quote></div>
THAT is much of the whole basis of the article about the 'bell curve' ...the type of methods that put some hospitals/centers out ahead of others. I do not doubt either that doctors and staff at many clinics love their patients and are devoted to their care and the numbers can't tell you everything- but on certain levels, the numbers DON'T lie. If the patients at one small group of clinics have average lung functions substantially ahead of the rest of the clinics in the country, the team there is clearly doing something right to achieve those results, beyond just caring about the patients. Those pft's are telling you something. The very large group of clinics that average mid-80's for their ped fev1 obviously can learn SOMETHING from the small handful of clinics whose patients are averaging fev1's around 100%.
Part of the key- it's not just about fev1. It's about digestive health, how aggressively the other aspects of health are managed, stressing compliance, etc... some clinics are reactive vs. proactive. The top clinics are the ones that are PROACTIVE and teach preventative ways of managing this disease, avoiding damage before it sets in to get kids to adulthood in a healthier state.
This thread is interesting. Seeing the fev1's adults had when they exited ped care is a good # to see; the statistics in the care center data are comprised of such a broad range of ages and naturally younger children will push that average up. And the fev1 (and other statistics as well) upon exiting your ped center is a reflection of the progression of your disease, yes- but also a reflection of the care you've gotten to date as well.
THAT is much of the whole basis of the article about the 'bell curve' ...the type of methods that put some hospitals/centers out ahead of others. I do not doubt either that doctors and staff at many clinics love their patients and are devoted to their care and the numbers can't tell you everything- but on certain levels, the numbers DON'T lie. If the patients at one small group of clinics have average lung functions substantially ahead of the rest of the clinics in the country, the team there is clearly doing something right to achieve those results, beyond just caring about the patients. Those pft's are telling you something. The very large group of clinics that average mid-80's for their ped fev1 obviously can learn SOMETHING from the small handful of clinics whose patients are averaging fev1's around 100%.
Part of the key- it's not just about fev1. It's about digestive health, how aggressively the other aspects of health are managed, stressing compliance, etc... some clinics are reactive vs. proactive. The top clinics are the ones that are PROACTIVE and teach preventative ways of managing this disease, avoiding damage before it sets in to get kids to adulthood in a healthier state.
This thread is interesting. Seeing the fev1's adults had when they exited ped care is a good # to see; the statistics in the care center data are comprised of such a broad range of ages and naturally younger children will push that average up. And the fev1 (and other statistics as well) upon exiting your ped center is a reflection of the progression of your disease, yes- but also a reflection of the care you've gotten to date as well.
<div class="FTQUOTE"><begin quote>and only leads to the question of why do some centers have results leaps and bounds ahead of others when every doctor and nurse on the team cares just as much about the patients?</end quote>
THAT is much of the whole basis of the article about the 'bell curve' ...the type of methods that put some hospitals/centers out ahead of others. I do not doubt either that doctors and staff at many clinics love their patients and are devoted to their care and the numbers can't tell you everything- but on certain levels, the numbers DON'T lie. If the patients at one small group of clinics have average lung functions substantially ahead of the rest of the clinics in the country, the team there is clearly doing something right to achieve those results, beyond just caring about the patients. Those pft's are telling you something. The very large group of clinics that average mid-80's for their ped fev1 obviously can learn SOMETHING from the small handful of clinics whose patients are averaging fev1's around 100%.
Part of the key- it's not just about fev1. It's about digestive health, how aggressively the other aspects of health are managed, stressing compliance, etc... some clinics are reactive vs. proactive. The top clinics are the ones that are PROACTIVE and teach preventative ways of managing this disease, avoiding damage before it sets in to get kids to adulthood in a healthier state.
This thread is interesting. Seeing the fev1's adults had when they exited ped care is a good # to see; the statistics in the care center data are comprised of such a broad range of ages and naturally younger children will push that average up. And the fev1 (and other statistics as well) upon exiting your ped center is a reflection of the progression of your disease, yes- but also a reflection of the care you've gotten to date as well.
THAT is much of the whole basis of the article about the 'bell curve' ...the type of methods that put some hospitals/centers out ahead of others. I do not doubt either that doctors and staff at many clinics love their patients and are devoted to their care and the numbers can't tell you everything- but on certain levels, the numbers DON'T lie. If the patients at one small group of clinics have average lung functions substantially ahead of the rest of the clinics in the country, the team there is clearly doing something right to achieve those results, beyond just caring about the patients. Those pft's are telling you something. The very large group of clinics that average mid-80's for their ped fev1 obviously can learn SOMETHING from the small handful of clinics whose patients are averaging fev1's around 100%.
Part of the key- it's not just about fev1. It's about digestive health, how aggressively the other aspects of health are managed, stressing compliance, etc... some clinics are reactive vs. proactive. The top clinics are the ones that are PROACTIVE and teach preventative ways of managing this disease, avoiding damage before it sets in to get kids to adulthood in a healthier state.
This thread is interesting. Seeing the fev1's adults had when they exited ped care is a good # to see; the statistics in the care center data are comprised of such a broad range of ages and naturally younger children will push that average up. And the fev1 (and other statistics as well) upon exiting your ped center is a reflection of the progression of your disease, yes- but also a reflection of the care you've gotten to date as well.
<div class="FTQUOTE"><begin quote>and only leads to the question of why do some centers have results leaps and bounds ahead of others when every doctor and nurse on the team cares just as much about the patients?</end quote>
<br />
<br />THAT is much of the whole basis of the article about the 'bell curve' ...the type of methods that put some hospitals/centers out ahead of others. I do not doubt either that doctors and staff at many clinics love their patients and are devoted to their care and the numbers can't tell you everything- but on certain levels, the numbers DON'T lie. If the patients at one small group of clinics have average lung functions substantially ahead of the rest of the clinics in the country, the team there is clearly doing something right to achieve those results, beyond just caring about the patients. Those pft's are telling you something. The very large group of clinics that average mid-80's for their ped fev1 obviously can learn SOMETHING from the small handful of clinics whose patients are averaging fev1's around 100%.
<br />
<br />Part of the key- it's not just about fev1. It's about digestive health, how aggressively the other aspects of health are managed, stressing compliance, etc... some clinics are reactive vs. proactive. The top clinics are the ones that are PROACTIVE and teach preventative ways of managing this disease, avoiding damage before it sets in to get kids to adulthood in a healthier state.
<br />
<br />This thread is interesting. Seeing the fev1's adults had when they exited ped care is a good # to see; the statistics in the care center data are comprised of such a broad range of ages and naturally younger children will push that average up. And the fev1 (and other statistics as well) upon exiting your ped center is a reflection of the progression of your disease, yes- but also a reflection of the care you've gotten to date as well.
<br />
<br />THAT is much of the whole basis of the article about the 'bell curve' ...the type of methods that put some hospitals/centers out ahead of others. I do not doubt either that doctors and staff at many clinics love their patients and are devoted to their care and the numbers can't tell you everything- but on certain levels, the numbers DON'T lie. If the patients at one small group of clinics have average lung functions substantially ahead of the rest of the clinics in the country, the team there is clearly doing something right to achieve those results, beyond just caring about the patients. Those pft's are telling you something. The very large group of clinics that average mid-80's for their ped fev1 obviously can learn SOMETHING from the small handful of clinics whose patients are averaging fev1's around 100%.
<br />
<br />Part of the key- it's not just about fev1. It's about digestive health, how aggressively the other aspects of health are managed, stressing compliance, etc... some clinics are reactive vs. proactive. The top clinics are the ones that are PROACTIVE and teach preventative ways of managing this disease, avoiding damage before it sets in to get kids to adulthood in a healthier state.
<br />
<br />This thread is interesting. Seeing the fev1's adults had when they exited ped care is a good # to see; the statistics in the care center data are comprised of such a broad range of ages and naturally younger children will push that average up. And the fev1 (and other statistics as well) upon exiting your ped center is a reflection of the progression of your disease, yes- but also a reflection of the care you've gotten to date as well.