The CF Foundation’s Quality Improvement Initiative Is Featured in The New Yorker

In the December 6, 2004 issue of The New Yorker, “The Bell Curve,” an article by Atul Gawande, M.D., discusses the importance of quality care and the impact care can have on patient health and well being. Dr. Gawande praises the Cystic Fibrosis Foundation for being far ahead of other organizations in measuring the performance of its practitioners and for keeping detailed records of patient outcomes. He also mentions the Cystic Fibrosis Foundation’s Quality Improvement Initiative (QII); we would like to take this opportunity to tell you more about this important undertaking.

First, it is important to put the QII in context. Since the 1950s when parents whose children had CF created the CF Foundation, specialty care has been a central component of the CF Foundation’s mission. The CF Foundation began accrediting specialty CF centers in the 1960s; today it boasts a network of more than 115 specialty care centers nationwide. In 1964, the CF Foundation began tracking patient and care center data to identify the best practices and to establish clinical practice guidelines. This care center model, along with the development of new, specialized therapies for CF, is a large part of what has led to the striking increase in the median age of survival from early childhood in the 1950s and 1960s to the early 30s today. Further increases are projected well into the future.

The goal of the CF Foundation’s QII is to accelerate the rate of improvement in CF care, which will likely further impact survival. The CF Foundation is pursuing several strategies to achieve this goal including the following:

• Training care center staff. The CF Foundation is committed to giving all centers the tools they need to improve their practices. To date, approximately 55 care teams have been trained and coached on state-of-the-art quality improvement methodologies as they were performed at their centers. Plans are in place to equip all CF care centers in the near future.
• Identifying and enabling best practices. As indicated in The New Yorker article, “best practices” are not always easy to define and may not be applicable in all settings. The CF Foundation is committed to finding out what works and to making this information available to all of its CF care centers and to the CF patient community.
• Providing key information to care center teams through a secure and confidential Web-based Patient Registry. The CF Foundation has invested in the ongoing evolution of the Patient Registry as a tool for CF care centers to track progress on individual patients and on their patient populations as a whole. This Web-based system allows caregivers to track patient progress on an on-going basis, rather than through an annual hard copy report of population-based data. This system also sets the stage for translating this data into an understandable and useful format for CF patients and families.
• Involving patients and families with the care center teams in improving care. The CF Foundation believes that this is a critical component in achieving its goal and a number of centers have begun to get patients and families more fully involved in improving the care system with great success.

The CF Foundation is proud of its history of accomplishments in improving CF care and in extending the lives of people with CF. It is confident of continued success through the QII. The CF Foundation greatly appreciates the support of the CF care center teams in this important initiative and hopes that people with CF and their family members will continue to become active partners in advancing CF care. Together, we are adding tomorrows every day to the lives of those with CF!

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Posted 12/01/04