The Cystic Fibrosis Center of Chicago - Pioneering CF Care for Individuals of All Ages

    Annual Report - 2008

    The task of comparing outcomes between different CF Centers can be extremely
    difficult. Centers differ in the socio-economic make up of their patient population,
    geographical location, number of non-adherent patients, their level of
    aggressiveness in patient follow-up, insurance status, and patient population age
    distribution just to name a few. Atypical results in any of these factors can lead
    to a skewed assessment as to how well a center is doing. Additionally,
    there can be inherent variability in how centers perform on these and other variables
    - centers may perform more favorably in some factors or with certain types of
    patients. All of this makes determining how well a center is doing and how a center
    compares to others problematic.

    However, it is possible to at least examine how a center performs on certain
    processes and outcomes and monitoring functions based upon published standards
    of the Cystic Fibrosis Foundation.

    1. Flu Vaccination - Flu vaccination has taken on a very high profile with the rapid
    spread of the H1N1 virus, especially among younger populations. Vaccines for this
    and the typical seasonal flu are different. The Cystic Fibrosis Center of Chicago,
    as does The Centers for Disease Control (CDC), recommend that all children and
    adults who are at high risk (e.g., those with cystic fibrosis) receive both flu vaccines.

    In spite of this, in a typical year, prior to the swine flu outbreak, approximately only
    25% of those with CF receive flu vaccines. The Cystic Fibrosis Center of Chicago
    places a very high priority on ensuring that patients receive flu vaccines and we have
    set a standard of a 90% vaccination rate.

    This is accomplished through aggressive tracking and documentation of vaccinations
    starting in September and ending in December. In 2008, 97% of patients with CF
    received the flu vaccine. This compares very favorably to the national average of 25%
    as reported by the Cystic Fibrosis Foundation.

CFcenter@wecare4lungs.com

    2. Better Monitoring - Numerous research studies have shown that patients with
    more intensive monitoring have better outcomes. For those with CF, outcomes are
    strongly linked to

                               - More frequent office visits
                               - More sputum cultures and lab diagnostics
                               - Increased use of antibiotics

    The Cystic Fibrosis Center of Chicago has developed a cutting edge computer
    tracking and monitoring system called PATS (Patient Analysis and Tracking
    System). PATS is a one of a kind system unique to The Cystic Fibrosis Center of
    Chicago and has been presented at the National Cystic Fibrosis Foundation
    Conference. It has enabled The Cystic Fibrosis Center of Chicago to achieve superior
    patient outcomes which significantly exceed national averages.

    3. Excellent Nutrition - Maintaining good nutrition is an important goal for the
    general population but an absolutely essential goal for those with cystic fibrosis.
    Likewise, if an individual with CF has any nutritional deficiencies, it is imperative
    that these be addressed for the maintenance of good health.

    While many parameters are utilized to monitor nutritional status, body mass index
    (BMI) is a frequently used measure and one that is recommended by the Cystic
    Fibrosis Foundation as an essential indicator of an individual’s nutritional level. BMI
    refers to a person’s height versus weight proportion. The Cystic Fibrosis Center of
    Chicago has developed a standard of BMI being at the 50th percentile or above.

    Clearly, The Cystic Fibrosis Center of Chicago’s average patient BMI percentile of
    51.5%ile is far superior to the national average of 44.7%ile.

    4. Lung Function Exceeds National Average - Lung function is one of the key
    indicators of health for those with cystic fibrosis. FEV1% reflects expiratory power
    of the lungs in terms of how much air is expelled in one second. It is expressed as
    a percent measure of how air would be expected to be expelled based upon a
    person’s age, height, weight, and racial background.

    Once again, The Cystic Fibrosis Center of Chicago’s average FEV1 percentile of
    87.0%ile significantly outperforms the national average of 76%ile.

    5. Infection Control – The spread of infection and controlling the risk of infection in
    the hospital setting are of critical importance to anyone with cystic fibrosis. The
    Cystic Fibrosis Center of Chicago has taken a leadership role in developing and
    implementing aggressive hospital infection control policies. Likewise, our outpatient
    offices have undertaken their own aggressive measures to control the spread of
    infection.

    Burkholderia cepacia represents one of the most problematic areas of infection
    control for those with CF. The Cystic Fibrosis Center of Chicago has implemented
    an aggressive program within all of our outpatient offices to minimize the risk of this
    infection. Our measures include:

            - Computerized staggered scheduling
            - Seeing patients with different infections on different days
            - Utilization of hygiene wipes specific to kill B Cepacia on all
                common area surfaces and equipment between patient visits
            - Aggressive and frequent monitoring by sputum culture in accredited
                microbiology labs with expertise in culturing B Cepacia

    These measures have allowed The Cystic Fibrosis Center of Chicago to achieve
    perfect results.

            WE HAVE NOT HAD A SINGLE CASE OF B CEPACIA IN 2008.

    Likewise, on an overall basis, The Cystic Fibrosis Center of Chicago has a minimal
    B Cepacia infection rate of 1% while the national rate of infection is 3.1%

    THE CYSTIC FIBROSIS CENTER OF CHICAGO HAS A B CEPACIA RATE
    OF INFECTION THAT IS 67% LOWER THAN THE NATIONAL AVERAGE.

    The Cystic Fibrosis Center of Chicago has significantly outperformed its peers in
    outcome parameters reported by the Cystic Fibrosis Foundation. We are dedicated
    to even further improving our excellent results and look forward to any feedback
    which will facilitate this endeavor.

Learn more about our advocacy efforts.