New Experiences in New Experiences in the CF Clinicthe CF Clinic

New Experiences in New Experiences in the CF Clinicthe CF Clinic

Why Do We Do What We Do?Why Do We Do What We Do?Darci Pfeil APNP Darci Pfeil APNP

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

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

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

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

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

Adding More Caloric Supplements

• Using high calorie infant formulas• Supplementing breast milk• Using more oral supplements• Recommending more high calorie

foods

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

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.

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

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

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

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.

If any questions or concerns ever arise during a clinic visit,

never hesitate to ask “Why do you do what you do?”

Thank you!!