Great Strides 2008
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Setting the PACE: Moving From Pediatric to Adult Care


Caryn Silliman, 20-Year-Old College Student

For 13 years, Caryn Silliman walked through the doors of her CF center and saw familiar, caring people who helped her stay healthy ever since her diagnosis at age four. “I felt at home with my care center staff and my mom was always with me to make sure that all the bases were covered when it came to my care,” Silliman said.

But at age 18, all of that changed when Silliman stepped into the world of adult care. There she encountered new people and new challenges; but with that she found new independence. “CF care seems more flexible at the adult level,” said Silliman. “The doctors focus not only on treatment, but on how treatment relates to living life as an adult.”

Silliman is just one of many people on a journey from pediatric to adult care. She transitioned from the Connecticut Children’s Medical Center Pediatric CF Care Center to the Hartford Hospital Adult CF Center.

More than 45 percent of the CF population is over the age of 18. Realizing the growing needs related to adult-specific care, the CF Foundation launched the Program for Adult Care Excellence (PACE) earlier this year. The program aims to expand the scope of adult care by recruiting and training additional CF adult care providers. PACE is designed to take existing adult CF care to the next level. The Foundation has been addressing the needs of the adult population for many years and currently, there are 96 adult care programs across the U.S.

For Silliman, one of the hardest parts of transitioning to adult care was going to her checkups without her mother. “There was so much to remember,” explained Silliman. “I had to keep track of so many different aspects of my health.”

Although managing her own care was challenging, Silliman said the adult center helped by developing care sheets with summaries of her visits. The adult doctors also met with Silliman and her pediatric team on a regular basis before a full transition took place.

“It helped to meet with both groups of doctors together,” recalled Silliman. “The adult team really got to know me and my care and treatment needs. It made it more personal and was very comforting.”

Although Silliman’s experience was positive, she said it is important to remember that it is an ongoing process. “I am still trying to work through my independence,” concluded Silliman. “You don’t just change care centers and move on. You continue to learn and grow in regard to your own healthcare.”

To hear more from Caryn, visit www.youtube.com/watch?v=F2S-FtgHo34.