Cargando…

Development of the US English version of the phenylketonuria – quality of life (PKU-QOL) questionnaire

BACKGROUND: Phenylketonuria (PKU) is a rare genetic disorder caused by a defect in the metabolism of phenylalanine (PHE) resulting in elevated blood and brain PHE levels, and leading to cognitive, emotional, and psychosocial problems. The phenylketonuria – quality of life (PKU-QOL) questionnaire was...

Descripción completa

Detalles Bibliográficos
Autores principales:	Jurecki, Elaina, Cunningham, Amy, Birardi, Vanessa, Gagol, Grégory, Acquadro, Catherine
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	BioMed Central 2017
Materias:	Research
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5343404/ https://www.ncbi.nlm.nih.gov/pubmed/28274259 http://dx.doi.org/10.1186/s12955-017-0620-1

Ejemplares similares

Measuring Burden of Illness in Phenylketonuria (PKU): Development of the PKU Symptom Severity and Impacts Scale as a Robust Patient-Reported Outcome
por: Quinn, Jennifer, et al.
Publicado: (2021)

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
por: Regnault, Antoine, et al.
Publicado: (2015)

New Strategies for the Treatment of Phenylketonuria (PKU)
por: Strisciuglio, Pietro, et al.
Publicado: (2014)

Phenylketonuria (PKU): A problem solved?
por: Brown, Christine S., et al.
Publicado: (2015)

The Adult Phenylketonuria (PKU) Gut Microbiome
por: Mancilla, Viviana J., et al.
Publicado: (2021)

Quality of life among parents of children with phenylketonuria (PKU)
por: Fidika, Astrid, et al.
Publicado: (2013)

Health Related Quality of Life assessment among early-treated Hungarian adult PKU patients using the PKU-QOL adult questionnaire
por: Barta, András Gellért, et al.
Publicado: (2020)

Living with phenylketonuria in adulthood: The PKU ATTITUDE study
por: Cazzorla, Chiara, et al.
Publicado: (2018)

Living with Phenylketonuria: Lessons from the PKU community
por: Ford, Suzanne, et al.
Publicado: (2018)

The influence of parental food preference and neophobia on children with phenylketonuria (PKU)
por: Evans, Sharon, et al.
Publicado: (2017)

Prospects for Cell-Directed Curative Therapy of Phenylketonuria (PKU)
por: Harding, Cary O.
Publicado: (2019)

Quality of life in phenylketonuria (PKU) patients residing in Iehran, Islamic republic of Iran
por: Hatami, H, et al.
Publicado: (2015)

Breast feeding in infants diagnosed with phenylketonuria (PKU): a scoping review
por: Kalvala, Jahnavi, et al.
Publicado: (2023)

Long-term comparative effectiveness of pegvaliase versus standard of care comparators in adults with phenylketonuria
por: Zori, Roberto, et al.
Publicado: (2019)

Dietetic Management of Adults with Phenylketonuria (PKU) in the UK: A Care Consensus Document
por: Robertson, Louise, et al.
Publicado: (2022)

Classical phenylketonuria presenting as maternal PKU syndrome in the offspring of an intellectually normal woman
por: Alghamdi, Malak Ali, et al.
Publicado: (2023)

Evaluation of quality of life and description of the sociodemographic state in adolescent and young adult patients with phenylketonuria (PKU)
por: Simon, Eva, et al.
Publicado: (2008)

Newborn screening 50 years later: access issues faced by adults with PKU
por: Berry, Susan A., et al.
Publicado: (2013)

Genetically engineered probiotic for the treatment of phenylketonuria (PKU); assessment of a novel treatment in vitro and in the PAH(enu2) mouse model of PKU
por: Durrer, Katherine E., et al.
Publicado: (2017)

Quality of Life (QoL) assessment in a cohort of patients with Phenylketonuria
por: Cazzorla, Chiara, et al.
Publicado: (2014)

"MY PKU": increasing self-management in patients with phenylketonuria. A randomized controlled trial
por: ten Hoedt, Amber E, et al.
Publicado: (2011)

Salivary serotonin does not correlate with central serotonin turnover in adult phenylketonuria (PKU) patients
por: Leung, Joseph, et al.
Publicado: (2018)

Parenting a Child with Phenylketonuria (PKU): an Interpretative Phenomenological Analysis (IPA) of the Experience of Parents
por: Carpenter, Katie, et al.
Publicado: (2018)

Nutrition, Microbiota and Role of Gut-Brain Axis in Subjects with Phenylketonuria (PKU): A Review
por: Verduci, Elvira, et al.
Publicado: (2020)

In Vivo Metabolic Responses to Different Formulations of Amino Acid Mixtures for the Treatment of Phenylketonuria (PKU)
por: Giarratana, Nadia, et al.
Publicado: (2022)

Cognitive Outcomes in Early-Treated Adults With Phenylketonuria (PKU): A Comprehensive Picture Across Domains
por: Palermo, Liana, et al.
Publicado: (2017)

Development of a practical dietitian road map for the nutritional management of phenylketonuria (PKU) patients on pegvaliase
por: Rocha, Júlio César, et al.
Publicado: (2021)

The Portuguese version of the RhinoQOL Questionnaire: validation and clinical application()()
por: Cerejeira, Rui, et al.
Publicado: (2015)

CLINICAL AND GENETIC STUDIES IN CASES OF PHENYLKETONURIA (PKU) AND A REPORT OF FOLLOW UP AFTER DIETARY THERAPY
por: Narayanan, H.S., et al.
Publicado: (1988)

Social-cognitive functioning and social skills in patients with early treated phenylketonuria: a PKU-COBESO study
por: Jahja, Rianne, et al.
Publicado: (2016)

Long-Term Follow-Up of Cognition and Mental Health in Adult Phenylketonuria: A PKU-COBESO Study
por: Jahja, Rianne, et al.
Publicado: (2017)

Preventing maternal phenylketonuria (PKU) syndrome: important factors to achieve good metabolic control throughout pregnancy
por: Rohde, Carmen, et al.
Publicado: (2021)

A Retrospective Chart Review and Infant Feeding Survey in the Irish Phenylketonuria (PKU) Population (2016–2020)
por: Rice, Jane, et al.
Publicado: (2023)

Improved attention linked to sustained phenylalanine reduction in adults with early‐treated phenylketonuria
por: Bilder, Deborah A., et al.
Publicado: (2021)

Uniformity of Food Protein Interpretation Amongst Dietitians for Patients with Phenylketonuria (PKU): 2020 UK National Consensus Statements
por: Evans, Sharon, et al.
Publicado: (2020)

Cultural adaptation and validation of the Norwegian version of the swallowing quality of life questionnaire (SWAL-QOL)
por: Rivelsrud, Maribeth Caya, et al.
Publicado: (2019)

Health economic burden of patients with phenylketonuria (PKU) – A retrospective study of German health insurance claims data
por: Trefz, Friedrich, et al.
Publicado: (2021)

Nutrition management of PKU with pegvaliase therapy: update of the web-based PKU nutrition management guideline recommendations
por: Cunningham, Amy, et al.
Publicado: (2023)

Quality of life after pulmonary embolism: validation of the French version of the PEmb-QoL questionnaire
por: Rochat, Mathilde, et al.
Publicado: (2014)

Reliability and validity of the Persian version of patient assessment of constipation- quality of life (PAC-QOL) questionnaire
por: Mokhtare, Marjan, et al.
Publicado: (2017)

Cannot write session to /tmp/vufind_sessions/sess_2md1p3vrndtanf0ekf6hopqs7o