Data Transparency

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Dear Families:

Indiana University/Riley Hospital for Children is one of more than 115 care centers across the country accredited by the Cystic Fibrosis Foundation. We work closely with the Foundation to continue to improve care and the quality of life for our patients.
Since the CF Foundation was established in 1955, we've all made great strides in treating this disease. Today, the predicted median age of survival for people with cystic fibrosis is nearly 37 years. We are proud of this progress. And, we're always striving to improve.

It is our desire and our responsibility to provide the best possible care to you and/or your child.
In December, the CF Foundation will take another significant step in quality improvement by publicly reporting health outcomes data for all care centers on the web site: www.cff.org. The CF Foundation is providing this information proactively to accelerate the quality of care for individuals with CF-and to further strengthen the relationship between patient, their families and the care center.

The data will show center-specific health outcomes results, how they compare to national averages and aggressive national goals established by medical experts. It will include four measures vital to the health of people with CF:

Nutritional status (measured by body mass index)
Lung function
Percent of patients screened for CF-related diabetes
Percent of patients who complete the recommended four clinical visits per year, one respiratory culture and two pulmonary function tests.

We encourage you to review the public reports on the web site. We will also have our Center's data available in clinic within the next few months.
Keep in mind that the numbers in the public report are only a part of the story. The outcomes relate in part on your follow through on the treatment plan that we have discussed in clinic. If you are having trouble following your treatment plan, please let us know so we can try to help you.

Over the past six months, our center has been implementing standardized prescribing practices. Standardized prescribing practices assist in making all therapies available to all who may benefit from available therapies. We are focusing on areas that promote optimal lung health. We have implemented an algorithm (a prescribing tree) for TOBI, Pulmozyme, and azithromycin. Each week before CF Clinic, the nursing staff reviews each patient's chart to determine if all possible therapies have been reviewed with the family. This information is then discussed with the CF Care Team prior to each clinic session. Our goal is to work with you to provide the best long-term outcome for you and/or your child.

The Cystic Fibrosis Foundation is recommending a Body Mass Index (weight in relation to height) for all persons with cystic fibrosis to be at least at the 50th percentile. New studies have shown that persons with CF who are well nourished tend to have better lung function. On the day of your visit, body mass index of all patients scheduled for clinic that day have been calculated by the dietitian and provided to your CF pulmonologist. At each patient's annual screen, growth charts as well as body mass index percentiles and weight goals are provided to each family. If there is a concern about weight, please feel free to discuss treatment options to improve nutritional status with your CF health care providers.

As a Center, we remain committed to the Seven Worthy Goals instituted by the CFF and look forward to you and your family joining in our mission to achieve the best possible care plan for our patents. These goals are as follows:

Patients and families are full partners with the CF care team in managing this disease.
Children and adolescents will have normal growth and nutrition. Adults' nutrition will be maintained as near normal as possible.
All patients will receive appropriate therapies for maintaining lung function and reducing acute episodes of infection.
The care team will be well informed in reducing acquisition of respiratory pathogens.
Patients will be screened and managed aggressively for complications of CF.
Severely affected patients will be well supported by their CF team in facing decisions about transplantation and end-of-life care.
Patients will have access to appropriate therapies regardless of race, age, education or ability to pay.
If you have questions or suggestions, please call your physician or a member of the care team or make an appointment to see us in clinic. We want to work with you to improve both your care and health outcomes and our center's care and health outcomes. We look forward to seeing you soon.
Sincerely,

Michelle, S. Howenstine, MD
Director, Cystic Fibrosis Center
Professor of Clinical Pediatric

Judy Hollingsworth, RN, MSN
Manager of Clinical Operations
Clinical Nurse Specialist

[Keyword: Cystic Fibrosis]

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