Everyday Life, Dietary Practices, and Health Conditions of Adult PKU Patients: A Multicenter, Cross-Sectional Study.
Activities of Daily Living
/ psychology
Adolescent
Adult
Amino Acids
/ administration & dosage
Cross-Sectional Studies
Depression
/ epidemiology
Diet, Protein-Restricted
/ psychology
Dietary Supplements
/ statistics & numerical data
Feeding Behavior
/ psychology
Female
Health Status
Humans
Male
Middle Aged
Patient Compliance
/ psychology
Phenylalanine
/ blood
Phenylketonurias
/ blood
Prevalence
Quality of Life
Surveys and Questionnaires
Young Adult
Adherence
Adulthood
Amino acid mixture
Diet
Phenylketonuria
Journal
Annals of nutrition & metabolism
ISSN: 1421-9697
Titre abrégé: Ann Nutr Metab
Pays: Switzerland
ID NLM: 8105511
Informations de publication
Date de publication:
2020
2020
Historique:
received:
02
04
2020
accepted:
16
07
2020
pubmed:
1
10
2020
medline:
17
8
2021
entrez:
30
9
2020
Statut:
ppublish
Résumé
Only few data on dietary management of adult phenylketonuria (PKU) patients are published. This study aimed to assess living situation, dietary practices, and health conditions of early-treated adult PKU patients. A total of 183 early-treated PKU patients ≥18 years from 8 German metabolic centers received access to an online survey, containing 91 questions on sociodemographic data, dietary habits, and health conditions. 144/183 patients (66% females) completed the questionnaire. Compared with German population, the proportion of single-person households was higher (22 vs. 47%), the rate of childbirth was lower (1.34 vs. 0.4%), but educational and professional status did not differ. 82% of the patients adhered to a low-protein diet, 45% consumed modified low-protein food almost daily, and 84% took amino acid mixtures regularly. 48% of the patients never interrupted diet, and 14% stopped diet permanently. 69% of the patients reported to feel better with diet, and 91% considered their quality of life at least as good. The prevalence of depressive symptoms was high (29%) and correlated significantly to phenylalanine blood concentrations (p = 0.046). However, depressive symptoms were only mild in the majority of patients. This group of early-treated adult German PKU patients is socially well integrated, reveals a surprisingly high adherence to diet and amino acid intake, and considers the restrictions of diet to their daily life as low.
Sections du résumé
BACKGROUND
Only few data on dietary management of adult phenylketonuria (PKU) patients are published.
OBJECTIVES
This study aimed to assess living situation, dietary practices, and health conditions of early-treated adult PKU patients.
METHODS
A total of 183 early-treated PKU patients ≥18 years from 8 German metabolic centers received access to an online survey, containing 91 questions on sociodemographic data, dietary habits, and health conditions.
RESULTS
144/183 patients (66% females) completed the questionnaire. Compared with German population, the proportion of single-person households was higher (22 vs. 47%), the rate of childbirth was lower (1.34 vs. 0.4%), but educational and professional status did not differ. 82% of the patients adhered to a low-protein diet, 45% consumed modified low-protein food almost daily, and 84% took amino acid mixtures regularly. 48% of the patients never interrupted diet, and 14% stopped diet permanently. 69% of the patients reported to feel better with diet, and 91% considered their quality of life at least as good. The prevalence of depressive symptoms was high (29%) and correlated significantly to phenylalanine blood concentrations (p = 0.046). However, depressive symptoms were only mild in the majority of patients.
CONCLUSION
This group of early-treated adult German PKU patients is socially well integrated, reveals a surprisingly high adherence to diet and amino acid intake, and considers the restrictions of diet to their daily life as low.
Identifiants
pubmed: 32998147
pii: 000510260
doi: 10.1159/000510260
doi:
Substances chimiques
Amino Acids
0
Phenylalanine
47E5O17Y3R
Types de publication
Journal Article
Multicenter Study
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
251-258Informations de copyright
© 2020 S. Karger AG, Basel.