FOOD AND NUTRITION CARE IN CYSTIC FIBROSIS

Sheri Chen, Nutrition Trainee, University of Arizona Pediatric Pulmonary Center

OUTLINE▪Background▪Needs assessment project▪Needs assessment survey▪Project Outline▪Expected Feedback▪ Feedback▪Project design

CYSTIC FIBROSISNutrition Care▪ Stunted growth, failure to thrive▪ Increased kcals/fat/protein diet▪ Increased growth → increase lung function▪ Pancreatic enzymes▪ Used when pancreatic ducts are blocked▪ Replace digestive enzymes that are normally replaced by pancreas▪ Creon, ZenPep

▪ Stool consistency

NEEDS ASSESSMENT ▪ Foodservice Staff▪ Educate the importance of increased kcals and fat needs▪ Value of higher caloric needs for CF patients▪ Possible collaboration with Registered Dietitian

▪ School Healthcare Staff (Nursing Staff)▪ Determine medication compliance within schoolchildren with CF▪ Nursing staff aware of enzyme administration

PROJECT OUTLINE1. Conduct survey2. Send surveys to Foodservice and Healthcare Staff3. Post surveys to UA PPC website4. Obtain and analyze feedback5. Determine feasibility on implementing education6. Assemble educational materials7. Meet with staff/parents to provide educational information

NEEDS ASSESSMENT SURVEYS

ANTICIPATED FEEDBACK▪ Foodservice staff is aware of student’s with CF▪ Unaware of the high caloric/fat needs▪ Not enough high caloric snacks enough▪ Not enough staff is educated about the high calorie needs for CF▪ Surveys were easy to use

▪ School healthcare staff is aware of which students have CF▪ Some students don’t take their own enzymes▪ Survey is not relevant to some schools

DATA COLLECTIONSchool Healthcare Provider: 15 responses

No: 6Yes: 1

Yes: 4No: 3

DATA COLLECTION School Healthcare Provider:

● Dependent on the school (Charter, Private, Public)● Student’s can self carry, however there is no compliance

monitoring● Parent’s provide extra for the health office● Parent’s provide extra for child

DATA COLLECTIONFoodservice staff:

▪ Department does not have special meal protocols for CF▪ Only implement accommodations based on diet order by

medical authority (as required by federal meal program)▪ Currently have 3 diet orders

▪ Increased servings/portions at breakfast and lunch▪ Whole milk

▪ Elementary level▪ Some schools provide snacks funded by parents▪ Health offices often have snacks

-TUSD RD

A DIFFERENT DIRECTION

▪Template letter to schools for nutrition accommodations

▪Education material for parents

▪ Promoting adequate intake at school▪ Easy snacks to pack ▪ Who to talk to at school for CF needs▪ How to talk with child at home▪ How to monitor proper enzyme use

Advocacy Letter

Education Material

Education Material

FOOD AND NUTRITION CARE

Children with Cystic Fibrosis often experience stunted growth and failure to thrive.

Nutritional status plays a huge role in a child's overall health and well being. A multitude of

studies have found that chronic malnutrition negatively impacts linear growth of a child

and inevitably survival. To help understand if the needs of CF children are being met at

school, it's important to become aware of their specific nutrition needs.

References1. SurveyMonkey. Log in to your account. https://www.surveymonkey.com/dashboard/. Accessed

April 28, 2018.2. Healthy High-Calorie Eating. CF Foundation.

https://www.cff.org/Life-With-CF/Daily-Life/Fitness-and-Nutrition/Nutrition/Getting-Your-Nutrients/Healthy-High-Calorie-Eating/. Accessed April 28, 2018.

3. CF at school. CF Buzz. http://www.cfbuzz.org/parents-and-carers/managing-school/. AccessedApril 28, 2018.

4. Education Tools: Nutrition. Pediatric Pulmonary Center.https://uappc.peds.arizona.edu/education-tools-nutrition. Accessed April 28, 2018.

This project is/was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number T72MC00012, University of Arizona Pediatric Pulmonary Center for grant amount $1,700,000. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.