FRINK Linked Data Fragments server

Matches in SemOpenAlex for { <https://semopenalex.org/work/W1548203477> ?p ?o ?g. }

• W1548203477 abstract "The aim of our study was to develop and validate the first set of PKU-specific Health-related Quality of Life (HRQoL) questionnaires that: 1) were developed for patients with PKU and their parents, 2) cover the physical, emotional, and social impacts of PKU and its treatment on patients' lives, 3) are age specific (Child PKU-QOL, Adolescent PKU-QOL, Adult PKU-QOL), 4) enable the evaluation of the HRQoL of children by their parents (Parent PKU-QOL), and 5) have been cross-culturally adapted for use in seven countries (i.e. France, Germany, Italy, The Netherlands, Spain, Turkey and the UK).The PKU-QOL questionnaires were developed according to reference methods including patients', parents' and healthcare professionals' interviews; testing in a pilot study (qualitative step in six countries), and linguistic validation of the finalised pilot versions in Turkish. For finalisation and psychometric validation, the pilot versions were included in a multicentre, prospective, non-interventional, observational study conducted in 34 sites in France, Germany, Italy, The Netherlands, Spain, Turkey and the UK. Iterative multi-trait analyses were conducted. Psychometric properties were assessed (concurrent and clinical validity, internal consistency reliability and test-retest reliability).Data from 559 subjects (306 patients, 253 parents) were analysed. After finalisation, the PKU-QOL questionnaires included 40 items (Child PKU-QOL), 58 items (Adolescent PKU-QOL), 65 items (Adult PKU-QOL) and 54 items (Parent PKU-QOL), distributed in four modules: PKU symptoms, PKU in general, administration of Phe-free protein supplements and dietary protein restriction. The measurement properties of the Adolescent, Adult and Parent PKU-QOL questionnaires were overall fairly satisfactory, but weaker for the Child questionnaire.The four PKU-QOL questionnaires developed for different ages (Child PKU-QOL, Adolescent PKU-QOL, Adult PKU-QOL), and for parents of children with PKU (Parent PKU-QOL) are valid and reliable instruments for assessing the multifaceted impact of PKU on patients of different age groups (children, adolescents and adults) and their parents, and are available for use in seven countries. They are very promising tools to explore how patients' perceptions evolve with age, to increase knowledge of the impact of PKU on patients and parents in different countries, and to help monitor the effect of therapeutic strategies." @default.
• W1548203477 created "2016-06-24" @default.
• W1548203477 creator A5002973087 @default.
• W1548203477 creator A5018416740 @default.
• W1548203477 creator A5025743334 @default.
• W1548203477 creator A5046547596 @default.
• W1548203477 creator A5048763642 @default.
• W1548203477 creator A5052556691 @default.
• W1548203477 creator A5086794617 @default.
• W1548203477 date "2015-05-10" @default.
• W1548203477 modified "2023-09-30" @default.
• W1548203477 title "Development and psychometric validation of measures to assess the impact of phenylketonuria and its dietary treatment on patients’ and parents’ quality of life: the phenylketonuria – quality of life (PKU-QOL) questionnaires" @default.
• W1548203477 cites W1538259514 @default.
• W1548203477 cites W1585735776 @default.
• W1548203477 cites W1603098903 @default.
• W1548203477 cites W1842911909 @default.
• W1548203477 cites W1902086951 @default.
• W1548203477 cites W1967280757 @default.
• W1548203477 cites W1974675433 @default.
• W1548203477 cites W1982055312 @default.
• W1548203477 cites W1986793930 @default.
• W1548203477 cites W1988853199 @default.
• W1548203477 cites W1989323794 @default.
• W1548203477 cites W1995375488 @default.
• W1548203477 cites W1997420536 @default.
• W1548203477 cites W2000114851 @default.
• W1548203477 cites W2013134165 @default.
• W1548203477 cites W2013700562 @default.
• W1548203477 cites W2024509488 @default.
• W1548203477 cites W2026935730 @default.
• W1548203477 cites W2034092396 @default.
• W1548203477 cites W2034490637 @default.
• W1548203477 cites W2034797974 @default.
• W1548203477 cites W2036379170 @default.
• W1548203477 cites W2043912194 @default.
• W1548203477 cites W2045169592 @default.
• W1548203477 cites W2054755825 @default.
• W1548203477 cites W2057936314 @default.
• W1548203477 cites W2086428720 @default.
• W1548203477 cites W2099620259 @default.
• W1548203477 cites W2102670954 @default.
• W1548203477 cites W2126537899 @default.
• W1548203477 cites W2132423376 @default.
• W1548203477 cites W2133323217 @default.
• W1548203477 cites W2145140938 @default.
• W1548203477 cites W2145143991 @default.
• W1548203477 cites W2167184224 @default.
• W1548203477 cites W2168448906 @default.
• W1548203477 cites W2170033011 @default.
• W1548203477 cites W4234971727 @default.
• W1548203477 cites W4249791806 @default.
• W1548203477 doi "https://doi.org/10.1186/s13023-015-0261-6" @default.
• W1548203477 hasPubMedCentralId "https://www.ncbi.nlm.nih.gov/pmc/articles/4449597" @default.
• W1548203477 hasPubMedId "https://pubmed.ncbi.nlm.nih.gov/25958326" @default.
• W1548203477 hasPublicationYear "2015" @default.
• W1548203477 type Work @default.
• W1548203477 sameAs 1548203477 @default.
• W1548203477 citedByCount "53" @default.
• W1548203477 countsByYear W15482034772015 @default.
• W1548203477 countsByYear W15482034772016 @default.
• W1548203477 countsByYear W15482034772017 @default.
• W1548203477 countsByYear W15482034772018 @default.
• W1548203477 countsByYear W15482034772019 @default.
• W1548203477 countsByYear W15482034772020 @default.
• W1548203477 countsByYear W15482034772021 @default.
• W1548203477 countsByYear W15482034772022 @default.
• W1548203477 countsByYear W15482034772023 @default.
• W1548203477 crossrefType "journal-article" @default.
• W1548203477 hasAuthorship W1548203477A5002973087 @default.
• W1548203477 hasAuthorship W1548203477A5018416740 @default.
• W1548203477 hasAuthorship W1548203477A5025743334 @default.
• W1548203477 hasAuthorship W1548203477A5046547596 @default.
• W1548203477 hasAuthorship W1548203477A5048763642 @default.
• W1548203477 hasAuthorship W1548203477A5052556691 @default.
• W1548203477 hasAuthorship W1548203477A5086794617 @default.
• W1548203477 hasBestOaLocation W15482034771 @default.
• W1548203477 hasConcept C126322002 @default.
• W1548203477 hasConcept C138885662 @default.
• W1548203477 hasConcept C159110408 @default.
• W1548203477 hasConcept C187212893 @default.
• W1548203477 hasConcept C23131810 @default.
• W1548203477 hasConcept C2779951463 @default.
• W1548203477 hasConcept C2781121862 @default.
• W1548203477 hasConcept C41895202 @default.
• W1548203477 hasConcept C512399662 @default.
• W1548203477 hasConcept C70410870 @default.
• W1548203477 hasConcept C71924100 @default.
• W1548203477 hasConcept C74909509 @default.
• W1548203477 hasConceptScore W1548203477C126322002 @default.
• W1548203477 hasConceptScore W1548203477C138885662 @default.
• W1548203477 hasConceptScore W1548203477C159110408 @default.
• W1548203477 hasConceptScore W1548203477C187212893 @default.
• W1548203477 hasConceptScore W1548203477C23131810 @default.
• W1548203477 hasConceptScore W1548203477C2779951463 @default.
• W1548203477 hasConceptScore W1548203477C2781121862 @default.
• W1548203477 hasConceptScore W1548203477C41895202 @default.
• W1548203477 hasConceptScore W1548203477C512399662 @default.
• W1548203477 hasConceptScore W1548203477C70410870 @default.
• W1548203477 hasConceptScore W1548203477C71924100 @default.
• W1548203477 hasConceptScore W1548203477C74909509 @default.

• next