Cystic Fibrosis Program

What is the Experience of Care (XoC) Survey?

The XoC is a short and easy to take survey that asks about in-person and virtual care experiences here at Riley. The survey includes questions about infection prevention and control, the way the care team responds to your questions and concerns, care planning, and overall communication and quality of the care experience. Patient responses are kept anonymous and are not linked to you or your child’s name or birthdate.

Why is the survey important?

Creating a better experience at your clinic visits is important to all of us — physicians, professional staff, patients, and families. The data and narrative comments captured in this new survey will aid our clinic team in working with our patients and families to form positive relationships, build trust, and partner to improve care.

Data Collection and Invitation Processes

Starting in 2024, the Riley CF Center has a unique URL/QR code to share with patients and families during routine CF visits. This QR code will invite you to participate in taking an XoC survey. When you come to CF clinic, we will share the QR code with you. Answers provided will be linked back to our program’s dashboard (but not to you or your child).

Program-level Report Reports

Data are reported in real-time, i.e., you completes a survey, the results are immediately visible for review. We see over 40 children with CF every week, so you will remain anonymous. Access to the reports is currently limited to the XoC Champions from our program. Summary results will be shared intermittently as we seek to address any concerns.

If you would like more information about being a Champion for Riley, email sbilinski@iuhealth.org

Courtesy of the Cystic Fibrosis Foundation

Orkambi is now approved for use in children with cystic fibrosis ages 1-2 years who have two F508del mutations.

We are very excited that the FDA has approved the use of the highly effective modulator therapy known as Trikafta® for use in children with cystic fibrosis who are ages 2 through 5 years. This announcement was released on April 26, 2023. This medication approval is for children who have at least one copy of the F508del mutation, or a few specific other mutations. Our CF center is working quickly to review all of the children we care for who are now eligible. We will discuss this with you at one of your upcoming clinic visits if you are scheduled to see our team within the next two months. Otherwise, you will hear from a CF team member in the coming weeks if your child will qualify and discuss starting on this therapy. Please contact our clinic if you have specific questions for your provider. We appreciate your patience as we identify children currently not receiving any modulator therapy, and move on to those who are eligible to transition from Orkambi®. For more information on Trikafta® and FDA approval for younger children, please visit: https://www.cff.org/news/2023-04/trikafta-approval-ages-2-5-mutations.

Current mask recommendations

Riley Children’s Health no longer requires masking in public or clinical areas for team members, patients, visitors and families. The Cystic Fibrosis Program will return to prior recommendations: All patients should wear masks when going through the hospital and may remove them once in a clinic room.

The importance of flu vaccine in children with CF and their families

We highly recommend flu vaccination for infants and children 6 months and older. The annual flu vaccine remains safe and effective at decreasing severe hospitalization in children.

We have vaccines available which can be given at the time of your child’s scheduled visit. Our center is also offering free family flu vaccines for those caregivers and siblings who accompany patients to clinic. If you are interested in a flu vaccine for your child or yourself at time of a visit, please notify staff when you are being roomed. You can also obtain your flu vaccine through primary care physicians, health department and local pharmacies.