Julie Matel MS RD CDE 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 ID: 759115
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Slide1
Be In Charge of Nutrition
Julie Matel, MS, RD, CDE
Slide2Objectives
Review the importance of growth and weight gain in children with cystic fibrosis (CF)Discuss behavioral barriers that may interfere with patients achieving nutrition goalsProvide evidence that behavioral plus nutrition interventions are effective in achieving nutrition goalsIntroduce a behavioral intervention approach that is showing promising results in improving weight gain
Slide3Importance 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)
Slide4Nutrition Guidelines for Children with CF
Calorie goals vary and may be as high as 120-150% RDA; 40% of calories from fatFor a 4 year old toddler:
Without CF: 1500-1600 caloriesWith CF: 1800-2300 caloriesB: oatmeal, orange juice, ½ toast with butterSnack: crackersB: add cranberries, butter to oatmealSnack: add peanut butter to crackersL: ½ Turkey Sandwich, Small bag of chips, Apple L: add avocado and cheese to sandwich; Substitute trail mix for chips Snack: granola bar, 2% milkChange to whole milk or smoothieD: 3 oz broiled chicken, 2% milk, mixed vegetables , r0ll Dessert: ice creamD: add olive oil to vegetables and butter to bread; Change to whole milk Dessert: choose Hagen Daz
Slide5Are 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)
Slide6Mealtime Struggles
Child: Crying/whining Delaying meals by talkingSpitting out foodLeaving 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)
Slide7Barriers 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)
Slide8Behavior 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)
Slide9Be In Charge (Behavioral intervention for change around growth and energy)
Behavioral plus nutrition intervention in children with cystic fibrosis (CF)
Slide10Be in Charge Phase II study
Enrollment through Stanford Children’s CF Center beginning in summer 2018Eligibility: have CFAre 3-10 years oldbelow 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 homeMeals have become a battlegroundWould like to work to improve your child’s nutrition
Slide11Be in Charge Phase II study: Program Features
Simple sign up (can be done in clinic with your care provider)Offers 7 educational sessions; 30-45 minute eachComplete these sessions in one sitting at your convenienceCan schedule these sessions within the program with reminders As you work through the program your care team can follow and support your progressBest to complete one session every 7-10 daysSessions will teach you specific behavioral and nutrition tools to try with your childIn between sessions you will be asked to practice what you learned and keep track of what your child eats
Slide12Slide13Be In Charge is an effective way to help kids with cystic fibrosis improve and maintain a healthy body mass index
.
(https://youtu.be/TAD-1-RmsrY)
Be
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In
tervention for
Ch
ange
A
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G
rowth and
E
nergy
Slide14Behavioral Strategies that Parents Can Implement
Slide15Target one Meal at a Time
Start with the easiest meal (ie: breakfast or snack)Make every bite and sip countSubstitute with high calorie alternatives
Slide16Use of Praising and Ignoring
Use your attention to reward your child for eating wellWithhold your attention when he is not eating
Slide17Eating Behaviors to Praise
Coming to the table right awaySitting up at the table ready to eatLoading fork or spoon with foodTaking several bites in a rowChewing foodSwallowing foodAsking for seconds; requesting more foodListening to your requests to eatUsing good table manners
Slide18Behaviors to Ignore at Meals
Not eatingComplaints about foodAny conversation while not eatingDawdling; efforts to divert your attention from eating
Slide19Examples 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…
Slide20Use of Rules at Mealtimes
Talk about mealtime rules in advanceDiscuss the reason for the ruleRehearse the rule and discuss consequences before the mealtimeUse praise for rule-following
Slide21Use of Privileges
Privileges are special activitiesChoose items not typically availableAvoid choosing things you believe your child should have or do no matter whatFood should not be used as a rewardVary the choice of the rewardInvolve the child in choosing the reward
Slide22Examples of Privileges
Watch a favorite TV showPlay computer gamesPlay videogamesHave extra time to play outsideTrip to library to pick out booksInvite a friend over after schoolListen to a favorite CD or cassette tapeTalk to a friend on the telephone (or face time, snapchat, Instagram) for 15 minutes
Slide23Use of Sticker Charts and Contracts
Sticker charts and contracts used to reinforce behavior and earn privileges/rewards
Slide24Contract Example
I Agree to Get Extra Energy At:SnackIf I meet my energy goals on at least 5 days, then I will earn a Trophy!My Name__________________________
Slide25Summary of Praising, Ignoring, and Using Rules at Meals
Describe what he is doing that you likePraise him for doing the things you likeTiming is keyIgnore efforts that get your attention that do not involve eatingEstablish rules in advanceUse Praise when rules are followedAlways follow through
Slide26Summary
Children with cystic fibrosis have increased energy needs Nutrition goals include achieving the 50%ile for BMI to maximize growth and lung functionMealtimes can be a frustrating experience for parents and children with CFBehavioral interventions have been shown to be helpful in meeting these goals
Slide27References
Ernst et al. Developmental and psychosocial issues in cystic fibrosis. Pediatr Clin N Am, 2011:58, 856-885.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, 2008:108,832-839.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. 2016;42(6):520-521.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, 530-535.