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Care Center Data: Questions Answered

What data are available?

You can look at data from all CF Foundation-accredited care centers around the United States. The national averages and national goals are also shown. The data includes four key health outcomes based on data from January 1, 2013 to December 31, 2013. 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 had the recommended four clinic visits, one sputum or throat culture and two lung function tests (PFT) per year.

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Who can help answer my questions about the data?

The center is your best contact to help answer your questions. We strongly encourage you and your care center to work together as partners to improve CF care for you or your child. If you are looking at data from another care center and wish to learn more, you can find that center's phone number under "Find a CF Care Center."

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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 think about 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 affects your or your child's health. It also affects your care center's data. Remember, the data only tells part of the story.

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Where does this data come from?

The information comes from the CF Foundation’s Patient Registry. Today, information on more than 27,000 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: height, weight, gender, genotype, lung function, pancreatic enzyme use, and complications of CF, like Cystic Fibrosis-related diabetes (CFRD).

Information in the Registry helps healthcare professionals 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 at individual centers to provide an accurate measurement of life expectancy. A number of the smaller centers may not have had any deaths in 2013. Therefore, reporting life expectancy for each center would not be accurate.

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How are the national goals chosen?

The national goals for CF health outcomes are part of our “CF practice guidelines” developed by experts in CF care, and based on research and information collected in the CF Patient Registry.

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What am I supposed to do with this data?

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 and find out how you can help improve the center's outcomes. Talk with your care center about what else you can do to improve your or your child’s health.

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My care center is below the national average — what can I do?

Talk to your care team. Find out about quality improvement work underway and ask how you can help. 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?
  • Do you follow the treatment guidelines and visit the clinic every three months?
  • 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 margin of error mean?

Margin of error is a measure of how accurate a data set is. The margin of error is added or subtracted from data reported. It tells us the likelihood that the exact number is within this range. The smaller the margin of error is, the more accurate the number is for 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.

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.

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 alone. Quality healthcare is much more than numbers. The relationship you have with your care center is of vital importantance. We suggest you review the data with your care team, 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 team you are still dissatisfied, think about getting a second opinion. If you do, make sure the doctor and staff are knowledgeable about CF. You can learn more by watching the CF Education Day Web cast, "Quality CF Care is More than the Numbers."

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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. Click on “Multi-Center Data” and select the health measure you are interested in seeing (e.g., Lung Function in Children) from the drop-down list. 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, specialized 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, their resources and their patient populations are different.

The CF Foundation’s quality improvement work is focused on identifying best practices, providing this information to people with CF, families and all care centers and help them to improve CF care. Learn more about quality improvement and ask your care center how you can get involved.

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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 level of health.

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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 2010 American Community Survey data), race/ethnicity and age at diagnosis. The adjustment for these 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 for people with CF, families and care centers, there is still variation in how labs identify germs. Therefore, experts in statistics and CF care decided that reporting this data for each center would not be accurate enough at this time.

The CF Foundation continues 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 prevent infections and avoid the spread of germs.

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Why does the CF Foundation make 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 foster 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 to improve care at my 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 web casts on this topic: 

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What is quality improvement?

Quality improvement works to improve the process of care through teamwork, leadership, and a sharing of best practices. The CF Foundation and its accredited care centers know that partnership is key. 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”.

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What is public reporting or data transparency?

Public reporting or data transparency means that the CF Foundation makes 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 for improvement.

It is hoped that the partnership between you and your care center will be strengthened.

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Updated 03/2/2015


The Cystic Fibrosis Foundation is an accredited charity of the Better Business Bureau.