1. Be In Charge of Nutrition
Julie Matel, MS, RD, CDE
Be In Charge of Nutrition

2. Objectives
Review the importance of growth and weight gain in children with cystic fibrosis (CF)
Discuss behavioral barriers that may interfere with patients achieving nutrition goals
Provide evidence that behavioral plus nutrition interventions are effective in achieving nutrition goals
Introduce a behavioral intervention approach that is showing promising results in improving weight gain

3. Importance of Growth and Weight Gain in Children with CF
Optimizing nutritional status and growth improves health outcomes and survival in children with CF (Yen et al;2013)
A BMI at or above 50% for age is associated with better lung function (Stallings et al;2008)

4. Nutrition Guidelines for Children with CF
Without CF: calories
With CF: calories
B: oatmeal, orange juice, ½ toast with butter
Snack: crackers
B: add cranberries, butter to oatmeal
Snack: add peanut butter to crackers
L: ½ Turkey Sandwich, Small bag of chips, Apple
L: add avocado and cheese to sandwich; Substitute trail mix for chips
Snack: granola bar, 2% milk
Change to whole milk or smoothie
D: 3 oz broiled chicken, 2% milk, mixed vegetables , r0ll
Dessert: ice cream
D: add olive oil to vegetables and butter to bread; Change to whole milk
Dessert: choose Hagen Daz
Calorie goals vary and may be as high as % RDA; 40% of calories from fat
For a 4 year old toddler:

5. Are we achieving these goals?
Across 117 CF centers in the US, 57% of girls and 56% of boys failed to achieve 50%ile for BMI (Stallings et al, 2008)
Studies of dietary intake show that most children with CF do not achieve these recommendations (Kawchak et al., 1996; Powers et al. 2002; Stark et al., 1995, 1997)

6. Mealtime Struggles Child: Crying/whining Delaying meals by talking
Spitting out food
Leaving the table
Parent:
Increased coercion
“you can’t leave the table until you finish your meal”
Commands to get child to eat “take one more bite”
Physical prompts (picking up the fork and feeding child)

7. Barriers to Achieving Nutrition Goals
Children with CF show a higher frequency of behaviors that interfere with eating (Ernst et al;2015)
Parents report having little control over their children’s eating patterns (Ernst et al; 2015)
Longer mealtimes
did not correlate with improvement in calorie intake
Did correlate with a lower weight %ile in children with CF (Stark et al;2002)

8. Behavior interventions may improve nutrition outcomes
4-12 year old children with CF that participated in a 9 week behavioral plus nutrition intervention experienced a significantly lower decline in BMI over a 2 year period compared with age matched controls that received nutrition intervention alone. (Stark et al;2011)
In a randomized trial, behavioral and nutritional interventions improved energy intake and height for age z-scores after a 6 month intervention in children age 2-6 years with CF. (Powers et al;2015)
Less frequent mealtime behavior problems led to better calorie intake and weight gain in a 9 week clinical trial of behavior intervention and nutrition education to improve nutritional status in CF. (Opipari-Arrigan et al; 2010)
Pilot study of a web-based behavioral nutrition intervention program (Be In Charge) showed that children of mother’s who participated experienced a significant improvement in weight pre-to-post treatment. (Stark et al;2015)

9. Be In Charge (Behavioral intervention for change around growth and energy)
Behavioral plus nutrition intervention in children with cystic fibrosis (CF)

10. Be in Charge Phase II study
Enrollment through Stanford Children’s CF Center beginning in summer 2018
Eligibility:
have CF
Are 3-10 years old
below the 50th percentile BMI and/or struggling with recommended nutrition intake
Talk to your team about participation if you feel:
Frustrated with mealtimes in your home
Meals have become a battleground
Would like to work to improve your child’s nutrition

11. Be in Charge Phase II study: Program Features
Simple sign up (can be done in clinic with your care provider)
Offers 7 educational sessions; minute each
Complete these sessions in one sitting at your convenience
Can schedule these sessions within the program with reminders
As you work through the program your care team can follow and support your progress
Best to complete one session every 7-10 days
Sessions will teach you specific behavioral and nutrition tools to try with your child
In between sessions you will be asked to practice what you learned and keep track of what your child eats

12. All 7 sessions can be found on the Be In Charge home page
All 7 sessions can be found on the Be In Charge home page. Sessions are unlocked 1 by 1, as the primary user progresses through the program

13. Behavioral Intervention for Change Around Growth and Energy
Based on these observations and the behavioral theory – my colleague Dr. Lori Stark developed an intervention for families of children with CF that were 4-11 years and below the 50th percentile BMI
Overview of the different features in Be In Charge:
Account Creation
Add Caregivers
Scheduling
Tutorials
Menu Features
Sessions
My Data
Mobile App
Notifications
Be In Charge is an effective way to help kids with cystic fibrosis improve and maintain a healthy body mass index. (

14. Behavioral Strategies that Parents Can Implement

15. Target one Meal at a Time
Start with the easiest meal
(ie: breakfast or snack)
Make every bite and sip count
Substitute with high calorie alternatives

16. Use of Praising and Ignoring
Use your attention to reward your child for eating well
Withhold your attention when he is not eating

17. Eating Behaviors to Praise
Coming to the table right away
Sitting up at the table ready to eat
Loading fork or spoon with food
Taking several bites in a row
Chewing food
Swallowing food
Asking for seconds; requesting more food
Listening to your requests to eat
Using good table manners

18. Behaviors to Ignore at Meals
Not eating
Complaints about food
Any conversation while not eating
Dawdling; efforts to divert your attention from eating

19. Examples of Praise Statements
Hey, you’re really sharp, you ate all your lasagna!
Billy, I really like how you came inside for snack as soon as I called you!
You do a good job at mixing chocolate syrup in your milk!
Since you’re eating your snack, let me answer the question you had about…

20. Use of Rules at Mealtimes
Talk about mealtime rules in advance
Discuss the reason for the rule
Rehearse the rule and discuss consequences before the mealtime
Use praise for rule-following

21. Use of Privileges Privileges are special activities
Choose items not typically available
Avoid choosing things you believe your child should have or do no matter what
Food should not be used as a reward
Vary the choice of the reward
Involve the child in choosing the reward

22. Examples of Privileges
Watch a favorite TV show
Play computer games
Play videogames
Have extra time to play outside
Trip to library to pick out books
Invite a friend over after school
Listen to a favorite CD or cassette tape
Talk to a friend on the telephone (or face time, snapchat, Instagram) for 15 minutes

23. Use of Sticker Charts and Contracts
Sticker charts and contracts used to reinforce behavior and earn privileges/rewards

24. Contract Example Snack I Agree to Get Extra Energy At:
If I meet my energy goals on at least 5 days,
then I will earn a Trophy!
My Name__________________________

25. Summary of Praising, Ignoring, and Using Rules at Meals
Describe what he is doing that you like
Praise him for doing the things you like
Timing is key
Ignore efforts that get your attention that do not involve eating
Establish rules in advance
Use Praise when rules are followed
Always follow through

26. Summary Children with cystic fibrosis have increased energy needs
Nutrition goals include achieving the 50%ile for BMI to maximize growth and lung function
Mealtimes can be a frustrating experience for parents and children with CF
Behavioral interventions have been shown to be helpful in meeting these goals

27. References
Ernst et al. Developmental and psychosocial issues in cystic fibrosis. Pediatr Clin N Am, 2011:58,
Opipari-Arrigan, L. et al. Mealtime problems predict outcome in clinical trial to improve nutrition in children with CF. Pediatr Pulmonol. 2010;45 (1):78-82.
Powers, S. et al. Behavioral and nutritional treatment for preschool-aged children with cystic fibrosis. JAMA Pediatr. 2015;169(5).
Stallings, V. A, et al. Evidenced-based practice recommendations for nutrition-related management of children and adults with cystic fibrosis and pancreatic insufficiency: Results of a systematic review. J ADA, 2008:108,
Stark et al. The Effects of an intensive behavior and nutrition intervention compared to standard of care on weight outcomes in CF. Pediatr Pulmonol. 2011;46(1):31-35.
Stark et al. Web-based intervention for nutritional management in cystic fibrosis: development, usability, and pilot trial. Pediatr Pulmonol ;42(6):
Yen, E. H. et al. Better nutritional status in early childhood is associated with improved clinical outcomes and survival in patients with cystic fibrosis. J Pediatr 2012: 162,