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- Title
Phenylketonuria patients' and their parents' knowledge and attitudes to the daily diet - multi-centre study.
- Authors
Witalis, Ewa; Mikoluc, Bozena; Motkowski, Radoslaw; Sawicka-Powierza, Jolanta; Chrobot, Agnieszka; Didycz, Bozena; Lange, Agata; Mozrzymas, Renata; Milanowski, Andrzej; Nowacka, Maria; Piotrowska-Depta, Mariola; Romanowska, Hanna; Starostecka, Ewa; Wierzba, Jolanta; Skorniewska, Magdalena; Wojcicka-Bartlomiejczyk, Barbara; Gizewska, Maria; Car, Halina
- Abstract
Background: The aim of the study was to assess both patients' and their parents' knowledge of phenylketonuria (PKU) treatment and compliance with PKU diet. Methods: The study included 173 PKU patients aged 10-19 and 110 parents of PKU children who were enrolled in the study on the basis of questionnaire data. The study also included 45 patients aged ≥20. Results: Our study demonstrated that only 45% ( n = 74) of PKU patients knew daily Phe intake recommendations, 27% of patients ( n = 41) knew the Phe content in a minimum of three out of four researched food products. Patients' knowledge concerning Phe intake ( p = 0.0181) and the knowledge of selected food products ( p = 0.041819) improved with age. We did not establish such a correlation in the group of PKU children's parents. Approximately 31% of patients and 22% of parents reported helplessness, which increased with the child's age, associated with the necessity to adhere to the diet; 30% of patients reported feeling ashamed of the fact that they could not eat all food products. Regardless of age, children were more likely than parents to report helplessness ( p = 0.032005). Among patients, 41.40% declared that they would wish to select products unassisted but their parents did not permit them to do so. The question of whether parents teach children self-reliance in meal preparation was answered affirmatively by 98% of parents and only 81% of children ( p = 0.0001). Conclusion: Our data demonstrated that parents' and children's knowledge concerning treatment recommendations and food products does not have a direct impact on attitude to the PKU diet. Limiting children's independence in meal selection, growing helplessness in the face of dietary adherence and shame resulting from the necessity to follow a different diet observed in PKU families are responsible for shaping and perpetuating a consistently negative attitude to the diet. The care of PKU paediatric patients requires consistent, long-term family and individual therapy which may counteract the effects of learned helplessness. In regard to the educational effort, a good parent-child relationship as well as the teaching of behaviours motivating patients to comply with the diet are of great importance.
- Subjects
AGE distribution; COOKING; HELPLESSNESS (Psychology); PATIENT compliance; PHENYLKETONURIA; PROBABILITY theory; QUESTIONNAIRES; SHAME; PSYCHOLOGY of the sick; PARENT attitudes; HEALTH literacy; PATIENTS' attitudes; DESCRIPTIVE statistics
- Publication
Nutrition & Metabolism, 2017, Vol 14, Issue 1, p1
- ISSN
1743-7075
- Publication type
Article
- DOI
10.1186/s12986-017-0207-1