Tuesday, January 02, 2007

Quality Improvement in CF Care

The Cystic Fibrosis Foundation (CFF) continues to make a difference in the lives of patients with CF and their families. In order to facilitate excellence in health care and increase the level of involvement between patients, their families and the cystic fibrosis team clinic, the CFF has provided care center data via their website.

CFF Care Center Data


" Reporting data from our nationwide network of centers is part of a comprehensive quality improvement effort by the Foundation. Our goal is to help people with CF live longer and better lives. In fact, the Foundation is one of the first health organizations in the country to provide health outcomes data to the public, demonstrating an intense commitment to raise quality of care to an even higher level." --Robert J. Beall, PhD, President CFF

This effort has been more than 6 years in the making. The CFF hopes that this data proves beneficial to the CF community. By publicly reporting Care Center Data, everyone involved with CF can be encouraged and inspired to raise the bar to new heights. As the president of the CFF puts it "Quality CF care is more than numbers."

As a person with CF I have a unique perspective on quality being about more than numbers. Some of the numbers that I think about are my weight, body mass index, lung function, the amounts of medications I take and the number of days I have to put life on hold when exacerbations occur. Even as those numbers change, my overall quality of life is excellent, and that is, at least in part, due to the excellent care I receive at the CF Adult Clinic.

Currently, there is no cure for cystic fibrosis. The precious lives of children and young adults are being lost every day to this devastating disease. If you would like to help support the Cystic Fibrosis Foundation in its ongoing research to find a cure for CF, please consider making an online donation here. Approximately $.90 of every dollar is used effectively to fund research and provide many tomorrows for those who battle CF.

If you would like to read a brief description of cystic fibrosis, please follow this link.
If you are interested in learning what a typical day is like for an adult with CF, you can read my article here.

Comments:
Lauren,
I came across your blog in my search for more information on cystic fibrosis for a paper I am writing. I am a nursing student and was wondering if I could get some of your personal ideas on how Nurses, specifically, had been caring toward you and your condition. Things such as talking you through new treatments or encouraging advice given would be helpful. Also I would love any advice you would be willing to give me personally that would help me be the best nurse for a CF patient. Your personal insites would be very helpful. squaretile@juno.com, Elise
 
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