New Experiences in the CF Clinic

1. New Experiences in the CF Clinic Why Do We Do What We Do? Darci Pfeil APNP

2. Some of the New Experiences • Wearing masks to/from clinic room • More frequent visits • Greater focus on weight/BMI • Adding more caloric supplements • More frequent vitamin D levels • Adjusting Vitamin D doses

3. Some of the New Experiences • Holding vitamins the day of labs • Independent clinic visits starting at age 14 • Turning 18, authorization for verbal communication • More opportunities to participate in studies

4. Wearing Masks • Our CF Center Infection Control Guidelines recommend all patients with CF mask when they come to clinic. • This protects our patients from coming into contact with other bacteria

5. More Frequent Visits • Based on several studies and recommendations from the NACFC year after year. • More frequent follow up results in better health outcomes • New flow sheet that recommends when to return to clinic. Based on weight and respiratory symptoms

6. Greater Focus on Weight/BMI • CF Foundation set of goal of 50%tile for BMI and Weight for Length • More and more studies show the impact of weight on lung function • Recently even more studies are focusing on early nutrition (age birth-4) and its impact later in life

7. Adding More Caloric Supplements • Using high calorie infant formulas • Supplementing breast milk • Using more oral supplements • Recommending more high calorie foods

8. More Frequent Vitamin D Levels • CF Foundation recommends a level>30 • Cholecalciferol is the supplement of choice. • If level is <30 we will increase dose of cholecalciferol. • We will recheck level in 3 months

9. Adjusting Vitamin D Doses • Goal is to have Vitamin D level >30 • If level is <30, cholecalciferol dose will be increased. • Vitamin D level will be rechecked.

10. Holding Vitamins the Day of Labs • New recommendation from our CF Center is to hold CF specific vitamin and cholecalciferol the day of lab draw • You may receive a reminder phone call the day before clinic appointment • This will allow for more accurate vitamin levels

11. Independent Clinic Visits starting at age 14 • As part of the transition program to adult care, we ask to see you alone for the first half of the visit. • This begins to build trust and confidence between you, your parents and the CF team as you begin to take a more active role in your care

12. Authorization for Verbal Communication When Turning 18 • By law, at 18 years of age, we need your permission to communicate with your parents. A release needs to be signed and on file in our system • Signing a form in clinic allows us to communicate verbally with parents in clinic or via phone calls

13. More Opportunities to Participate in Studies • As more and more medications are being developed, this means more studies are designed to test the medications. • You may be asked to participate in more studies. This sometimes means more frequent visits and recording information into a diary.

14. If any questions or concerns ever arise during a clinic visit, never hesitate to ask “Why do you do what you do?” Thank you!!