ArticleNutrition & metabolism2017
Phenylketonuria patients' and their parents' knowledge and attitudes to the daily diet - multi-centre study.
Article in Nutrition & metabolism, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
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Who cites it
15 citing papers in PubMed, 38 citations in OpenAlex.
- Improving phenylalanine and micronutrients status of children with phenylketonuria: a pilot randomized study.Orphanet journal of rare diseases · 2021Trial
- Longitudinal Metabolic Control in Children With Early-Treated Phenylketonuria.JAMA network open · 2026Article
- Sexual and reproductive life in adolescents and young adults with phenylketonuria: a cross-sectional study.Orphanet journal of rare diseases · 2026Article
- Challenges in dietary management: a qualitative study on caregivers of preschool and school-age children with citrin deficiency.Orphanet journal of rare diseases · 2025Article
- Article
- Impact of a mobile health intervention on health management among children with phenylketonuria based on a multi-theory model of the behavior change wheel theory and family health theory: protocol for a randomized controlled trial.Frontiers in psychiatry · 2025Article
- The effects of a self-learning package on mothers' knowledge and practices towards caring for their children with phenylketonuria.Journal of medicine and life · 2023Article
- Self-care support of diet and the gut in the routine care of school-age children with long-term conditions: An integrative review.Journal of child health care : for professionals working with children in the hospital and community · 2022Review
- Knowledge, perceptions and behaviours regarding dietary management of adults living with phenylketonuria.Journal of human nutrition and dietetics : the official journal of the British Dietetic Association · 2022Article
- Article
- Assessment of parents´ knowledge regarding phenylketonuria and its affecting factors: a cross-sectional study.The Pan African medical journal · 2022Article
- Moving through adulthood: The lived experience of Irish adults with PKU.Frontiers in psychology · 2022Article
- Adaptation and Validation of a Questionnaire to Evaluate Knowledge of the Low Phe Diet in PKU.Nutrients · 2021Article
- Ten-year retrospective review (2003-2013) of 56 inpatient admissions to stabilize elevated phenylalanine levels.JIMD reports · 2019Article
- Living with phenylketonuria in adulthood: The PKU ATTITUDE study.Molecular genetics and metabolism reports · 2018Article
Corrections and comments
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Authors and funding
19 authors at 7 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe aim of the study was to assess both patients' and their parents' knowledge of phenylketonuria (PKU) treatment and compliance with PKU diet.
methodsThe 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.
resultsOur study demonstrated that only 45% (
conclusionOur 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.
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