Great Strides 2006
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Adult CF Care Continues to Mature

An increasing number of people with cystic fibrosis (CF) are living into adulthood and leading healthier lives. In 2005, the Cystic Fibrosis Foundation reported another increase in the median predicted age of survival for people with CF to 36.5 years of age, up from 35.1 in 2004. This important number has grown by more than 20 percent over the past seven years alone.

As many patients are living longer, the percentage of the CF population reaching adulthood continues to grow significantly. In fact, nearly 43 percent of the entire CF population is now 18 years or older. Just 10 years ago, that number was less than 36 percent. In the 1970s, less than 10 percent of the CF population was likely to live to adulthood.

“It’s been a striking change,” said Susanna McColley, M.D., CF center director at Children’s Memorial Hospital in Chicago. “We now expect newly diagnosed infants to live into adulthood and encourage the families to plan for college, careers, marriage and even the possibility of children.”

To provide appropriate care for this growing population of adults, the CF Foundation has mandated the development of adult CF care programs at its accredited care centers. In 1993, only 14 specialized programs served adults exclusively. Today, there are more than 90. The same multidisciplinary approach to care has been instituted in the adult programs that have been in place for many years at their highly successful pediatric counterparts. Many of these adult care programs not only provide care for adults, but they also participate in clinical research trials and quality improvement efforts, and offer training for the next generation of adult care providers.

“It’s been very gratifying to see the growth and evolution of adult CF care programs across the country,” notes Jim Yankaskas, M.D., the chair of the CF Foundation’s Care Center Committee and adult program director at the University of North Carolina. “I applaud the Foundation for their progressive stance on this issue.”