Impact of a camp experience on phenylalanine levels, knowledge, attitudes,and health beliefs relevant to nutrition management of phenylketonuria in adolescent girls

Objective To evaluate the effectiveness of an education intervention in a s ummer camp setting on knowledge, attitudes, and health beliefs regarding me tabolic control of phenylketonuria and dietary compliance. Design An observational study of a weeklong metabolic camp for adolescent g irls with phenylketonuria (PKU) who were followed up over the course of 1 y ear. Observations also were made in 3 subsequent years of camp. Intervention The camp experience consisted of diet and disease education, s essions on reproductive development, and recreation. Group discussions on a ttitudes and perceptions about PKU related to dietary compliance were held with nutritionists and a pediatric psychologist. Outcome measures Biochemical and psychological data were collected on the f irst and last days of the camp to assess short-term effects of the interven tion, then at quarterly intervals during the year to determine the long-ter m impact of the camp. Precamp and Postcamp plasma amino acid data for the s ubsequent 3 years were also collected. Subjects/setting Analyses were based on 13 adolescent girls with PKU in the first year of a camp at Emory University in Atlanta, Ga, and compared with data from 11 additional campers enrolled the second year, 8 in the third y ear, and 7 in the fourth year. Mean age standard deviation of first-year ca mpers was 13 +/- 2 years, mean IQ +/- standard deviation was 98 +/- 16, and 9 of 13 girls had menstruated. Statistical analyses performed Short-term effects of the intervention were computed by comparing mean levels of response from the baseline period to t hose from the last day of camp using t tests for dependent samples. Repeate d-measures analysis of variance was used to assess the longterm effects of the camp experience over the course of a year at regular quarterly interval s. Results Short-term effects of the education intervention were significant r eductions in dietary phenylalanine intake., plasma phenylalanine levels, an d perceived isolation. However, these effects progressively returned to bas eline levels over the course of a year. The significant short- and long-ter m effects of increased knowledge of diet and disease persisted throughout t he study period. Applications/conclusions Short-term effects of the education intervention r esulted in improved metabolic control associated with improved attitudes, i ncreased knowledge of diet and disease, increased perceived support, and de creased barriers to dietary compliance in a camp setting.