VOL. XXXVIII | SPRING 2025
NEWS FROM THE FRONT
Cystic Fibrosis Center
NEWS & NOTES
Pediatric Cystic Fibrosis (CF) Program Update
Inside this issue… News from the Front What's News Patient Spotlight Parent to Parent Clinician's Corner Team Updates Research Updates
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Samya Nasr, MD, CF Center Director
significantly. After that, we wanted to see if this integration would help other CF centers around the country improve their transition process. So we asked another CF center to join us to evaluate the material. It has been very well accepted, and has been helping in increasing the use of CF R.I.S.E. by pwCF.
Our center has always been involved in projects to improve the care we provide for children and people with CF (c/ pwCF). We usually look at our CF registry data and talk to pwCF, their parents, and the CF parent advisory board to see what needs to be improved in our center. For this issue of our newsletter, I will be focusing on presenting some of our quality improvement projects. To prepare pwCF for transitioning to the adult CF program, we have been using the CF R.I.S.E. (Responsibility. Independence. Self-care. Education.) program to help assess what pwCF know about their disease and help them manage their own care. However, the CF R.I.S.E. material was not part of the electronic health record (EHR), which was a major barrier to consistent use of the program by the care team. Our pediatric program coordinator, Cathy Enochs, worked with the IT team at U-M to add the CF R.I.S.E. material to the EHR. Once that happened, the use of CF R.I.S.E. increased
Another project was to increase the rate of oral glucose tolerance testing (OGTT) in pwCF 10 years old and older to rule out CF-related diabetes. The project included dietitians looking ahead monthly and identifying pwCF that need the test, then notifying the families, ordering the OGTT ahead of the clinic visit, and placing a reminder phone call and portal message to the family
has been collaborating with us closely to follow pwCF who are diagnosed with CF-related diabetes, and joined one of our clinics every other month to make it more convenient for pwCF to be seen by both teams at the same clinic visit. We also worked to improve our CF educational material that we give to families of newly diagnosed cwCF. We started by reevaluating our current new patient educational material. Then we evaluated parental confidence and satisfaction with this material. That was accomplished by surveying the parents of cwCF who had been diagnosed at our center between January 2019 and May 2021. We developed the survey with the pulmonologists,
Quality Improvement team members at the CF Learning Network Community Conference. Tara Fahrner, RN (parent), Jennifer Butcher, PhD, Heather Trammell (parent), Cathy Enochs, RN, Samya Nasr, MD, Nour Kadouh, PharmD
before in-person clinic visits. That improved the adherence rates to OGTT completion. This project is ongoing and monitored closely. We also worked with the Pediatric Endocrinology department to see pwCF that have increased OGTT results as soon as possible. Dr. Hani, one of the pediatric endocrinologists,
social workers, nurses, and a psychologist, with input from our CF parent advisory board. Responses were reviewed and a focus group was formed for more detailed feedback. Parents reported receiving either the right amount (67 percent) or too little (33 percent) education. continued on page 2