(345) Improving nutrition knowledge in children with Cystic Fibrosis and their caregivers using CFF approved education materials

Background: Cystic Fibrosis (CF) is an inherited autosomal recessive disease that results in multi-system issues, most notably in the lungs and gastrointestinal tract (GI). Most people with CF have pancreatic insufficiency. This can lead to poor absorption and result in poor nutritional status. Due to their impaired digestion and malabsorption, nutrition related complications are common including salt depletion, weight loss and/or poor weight gain, fat-soluble vitamin deficiencies, and a variety of GI symptoms. Providing education is a key strategy to optimize the nutritional status of patients with CF. The purpose of this study was to utilize the existing nutrition related education materials available through the CF Foundation (CFF) Education Committee to increase knowledge in our pediatric patients and their caregivers.

Methods: A 24-question CF nutrition knowledge survey was created and distributed to all pediatric patients, age 10 and older, and at least 1 caregiver during an outpatient CF clinic visit . This was done over a 4-month period to assess baseline CF nutrition knowledge. Quarterly nutrition education was completed over a 9-month period which targeted education gaps identified from the baseline knowledge survey. During the education, CFF approved educational materials were provided to patients and families as well as verbal education. Following the intervention, the same knowledge survey was re-distributed to CF patients and at least 1 caregiver over another 4-month period to assess the change in CF nutrition knowledge. Pre- and post-knowledge survey results were compared. Data was recorded using a RedCap secure database.

Results: Baseline, 159 knowledge surveys were completed (56% caregivers, 44% children with CF). The average score was 79% correct, with caregivers demonstrating greater knowledge than the children (87% vs 68%, respectively). Only 25% of the 24-question survey were answered correctly by ≥ 90% of respondents. This demonstrated areas of knowledge gaps on which to focus the education.
Post-education surveys were completed by 134 respondents (61% caregivers, 39% by children with CF). The average score of all post-education surveys completed significantly improved, with an average of 87% correct (p< 0.001). Caregivers demonstrated higher scores than the children (91% vs 82% correct, respectively). Fifty-four percent of the 24-question post-education survey was answered correctly by ≥ 90% of respondents, also improved. Two questions showed the largest improvement in average score, both with a 40% improvement. These were questions about which type of food provides the most calories, and the number of snacks recommended per day for children with CF.

Conclusions: There was a statistically significant increase in the nutrition knowledge of pediatric CF patients and their caregivers following verbal and written CF specific nutrition education. As expected, caregiver's knowledge was greater than the children's knowledge.
When planning nutrition education, there were 2 questions that had the lowest score on the pre-education survey that were specifically targeted for education.

Providing nutrition education, both in written format and verbal instruction during outpatient CF clinic visits was effective in increasing nutrition knowledge in pediatric CF patients and their caregivers.

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