What data are available?
You can see data from your care center and centers around the United States. The national averages and national goals are also shown. The data includes four important health outcomes based on data from January 1, 2006 to December 31, 2006. These are:
- Lung function (measured by FEV1% predicted);
- Nutritional status (measured by body mass index or BMI);
- Percent of people with CF screened for CF-related diabetes (CFRD); and
- Percent of people with CF who completed the recommended four clinical visits per year, one sputum or throat culture and two lung function tests.
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Who can help me if I have trouble understanding the data?
Contact your care center. The center is in the best position to help you understand the data, and what it means to you. We strongly encourage you and your care center to work together as partners to improve CF care for you or your child and the center.
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What am I supposed to do with this information?
Start a conversation with your care center. Ask them to talk about the data at your center’s next family or education day or at your next clinic visit. Ask how you can get involved. Talk with your care center about what else you can do to improve your or your child’s health.
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Will this data tell me everything I need to know to choose a care center?
No. This data is only one element to consider when choosing a CF care center. You should also think about how well you work with the care center staff. Do you feel like you are a partner with them? Are they responsive to your concerns? The data shows how people with CF at each care center are doing. It’s important to think about what you are doing to keep your or your child's weight and lung function at its best.
- Are you coming to clinic every three months?
- Are you taking your medicines and doing airway clearance?
- Are you eating enough and taking enzymes with every meal and snack?
Following these recommended steps has an impact on your or your child's health and also affects your care center's data. Remember, the data only tells part of the story.
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Does the data for children at a center effect the data for adults at the center?
Yes, how well people with CF are doing when they move to another care center or an adult program will affect the data for the new center or program. Starting good CF care habits early in life can give children with CF the best chance for good results throughout life. It is important to partner with your CF care center to fully understand and change CF health outcomes for you or your child, your center and nationally.
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Where does this data come from?
The information used to create these reports comes from the CF Foundation’s Patient Registry. Today, information on over 24,000 people with CF who receive care at CF Foundation-accredited care centers is collected and added to the Patient Registry every year. The type of information collected includes state living in, height, weight, gender, genotype, lung function, pancreatic enzyme use, and complications related to CF, like CF-related diabetes.
Information in the Registry helps caregivers and researchers see new health trends, design clinical trials to test new therapies and improve the delivery of care for people with CF. The Registry only includes information from people with CF who have agreed to have their data entered into the database by their care center. To find out if your or your child's data is in the Registry, ask your care center.
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Where can I find life expectancy for my center?
Statistically, there are not enough deaths each year to provide an accurate measurement of life expectancy at individual centers. A number of the smaller centers had no deaths in 2006. Therefore, reporting life expectancy for each center would not have been accurate.
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How are the national goals chosen?
The national goals for CF health outcomes are set by experts in CF care and based on the latest data from research and the CF Patient Registry. You can learn more about how these goals are set in the “Patient Registry Annual Data Report, 2006.”
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My care center is below the national average—what can I do?
Talk to your care center and ask how you can help. Ask about getting involved or what quality improvement projects you can help with at your center. It also is important to review your or your child’s own health outcome measures. For instance:
- How does your or your child’s lung function (PFT) and nutritional status (BMI or BMI percentile) compare with the national averages and national goals?
- Are you doing the recommended clinic visits and treatment guidelines?
- When was your last sputum or throat culture? Do you know the results?
- When were you last screened for CF-related diabetes (CFRD)?
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What does the margin of error mean?
The margin of error is a number that shows how accurate a percentage is. The margin of error is added or subtracted from the percentage. This tells us the likelihood that the exact number is within this range. The smaller the margin of error is, the more accurate the data sample is of the full population. A large margin of error might mean that not enough data was gathered.
For example, if 48% of voters chose John Doe for president, but there is a ±3 margin of error, stated as “plus or minus 3%.” The margin of error says that 3% below and above 48% is a more accurate percentage of voters who voted for John Doe. So, between 45-51% of people voted for John Doe.
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What does the margin of error for the CF center data mean?
In the CF care center data, the margin of error is a number that shows how accurately an average (mean) is measured. For small centers with fewer patients participating in the registry, the margin of error will be large because the sample of people with CF is small in relation to the total number in the United States.
In addition, for centers with hundreds of patients participating in the registry, the margin of error will be small. For example, if Center A had 14 patients and Center B had 278 patients and both centers had an average FEV1 of 75%, Center A’s margin of error would be +/- 13%, stated as “plus or minus 13%”, and Center B’s margin of error would be +/- 5%. The margin of error for Center A shows the true FEV1 average is between 62% and 88%. Center B’s true results are between 70% and 80%.
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Should I move to a new center?
The CF Foundation does not recommend that you switch care centers based on these data. Quality healthcare is more than numbers. The relationship you have with your care center is important to your quality of care. We suggest you review the data with your care center. Discuss any concerns you may have and work together to improve care. The best care comes from a strong partnership between people with CF, families and their care center.
If after discussing these issues with your care center you are still dissatisfied, think about getting a second opinion. If you do, make sure the doctor and staff are knowledgeable about CF.
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Where are the top 10 centers?
The CF Foundation is not able to identify the best centers from this data because results vary by specific health measure. However, you can review the results of all centers for a specific health measure. Select the health measure you are interested in seeing (such as FEV1% predicted), and click on “Multi-Center Data.” The results are listed in alphabetical order by state and by center name.
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Why does one center have higher numbers or better health outcomes than another center?
All of the CF Foundation-accredited care centers deliver high quality care. However, when you evaluate data in any medical field and in any setting, you will find differences between centers, clinics or hospitals. Like each person, each center is different.
The focus of the CF Foundation’s efforts are to identify best practices across care centers, provide this information to people with CF, families and all care centers and help them to make changes. The goal is to speed-up the rate of improvement in CF care. Ask your care center how you can get involved to improve care.
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What do my center’s health outcomes mean for my or my child's care?
The data is an average of how all of the people with CF at a care center are doing. It’s important to remember that each person is an individual with his or her own plan of care and unique health outcomes.
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What does adjusted data mean and why did the CF Foundation adjust the data?
“Adjusted data” is a way to "level the playing field.” The lung and nutrition data are adjusted for patient characteristics that are known to effect health measures in CF and are outside of the control of the care centers. These include age, gender, pancreatic status (defined by use of enzymes), median income (based on 2000 U.S. Census data), race/ethnicity and age at diagnosis. The adjustment for these patient characteristics was applied in the same way for each center across the country.
For example, just as you cannot compare health outcomes at a community hospital to those of a cancer center that specializes in treating very sick patients, you cannot fairly compare care centers that have different patient populations without making some data adjustments. This is a standard and well-accepted approach to medical data.
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Why aren't infection rates for Pseudomonas or B. cepacia included?
While identifying and avoiding CF germs are critical issues for people with CF, families and care centers, there is still variation in what care centers do to limit contact with CF germs. Therefore, experts in statistics and CF care decided that reporting this data for each center would not be completely accurate.
The CF Foundation will continue to work with experts to review care center data, identify measures and determine the best way to analyze and display the data.
In the meantime, ask your care center what you can do to avoid the spread of germs.
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Why is the CF Foundation making this data available?
Sharing data is an important step in strengthening the trust and partnership between you and your care center. Our intent is to bring about discussions that will speed-up improvement in CF care and the health of everyone with CF.
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What resources are available to help me get involved in the quality improvement work at my care center?
The CF Foundation has developed a quality improvement tool kit featuring ideas about how you can get involved in quality improvement efforts at your center. Additionally, you can watch two Web casts on this topic, the first is “One Team’s Story: Raising the Bar of CF Care” (orig. air date April 5, 2005) and the second is “Quality CF Care is More Than Numbers" (orig. air date November 28, 2006).
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What is quality improvement?
Quality improvement looks at and works to improve the process of clinical care through teamwork and leadership. The CF Foundation and its accredited care centers are working together to speed up the rate of improvement in CF care. Making care center data available to you is a part of that effort. This information is intended to educate and inspire action. It is hoped that the partnership between you and your care center will be strengthened.
To learn more about quality improvement in CF care, watch the Web cast, "One Team's Story: Raising the Bar of CF Care,” and read "It's All About Suzy: Quality Improvement in CF Care."
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What is public reporting or data transparency?
Public reporting or data transparency means that the CF Foundation is making data on specific health measures at all CF Foundation-accredited care centers available to the public. This information is intended to educate and inspire action.
It is hoped that the partnership between you and your care center will be strengthened. Data transparency is another phrase used to describe this same process.
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Updated 1/23/08
