Results 11 to 20 of about 7,135 (173)

The PedsQL™ Family Impact Module: Preliminary reliability and validity [PDF]

Health and Quality of Life Outcomes, 2004
Background The PedsQL™ Measurement Model was designed to measure health-related quality of life (HRQOL) in children and adolescents. The PedsQL™ 4.0 Generic Core Scales were developed to be integrated with the PedsQL™ Disease-Specific Modules.
Dickinson Paige E, Burwinkle Tasha M, Sherman Sandra A, Varni James W, Dixon Pamela   +4 more
doaj   +3 more sources

PedsQL Eosinophilic Esophagitis Module [PDF]

Journal of Pediatric Gastroenterology and Nutrition, 2013
ABSTRACTObjective:Eosinophilic esophagitis (EoE) is a chronic esophageal inflammatory condition with a paucity of information on health‐related quality of life (HRQOL). The objective of the study was to report on the measurement properties of the PedsQL EoE Module.Methods:The PedsQL EoE Module was completed in a multisite study by 196 pediatric ...
James P, Franciosi, Kevin A, Hommel, Cristiane B, Bendo, Eileen C, King, Margaret H, Collins, Michael D, Eby, Keith, Marsolo, J Pablo, Abonia, Karl F, von Tiehl, Philip E, Putnam, Alexandria J, Greenler, Allison B, Greenberg, Ronald A, Bryson, Carla M, Davis, Anthony P, Olive, Sandeep K, Gupta, Elizabeth A, Erwin, Mary D, Klinnert, Jonathan M, Spergel, Jolanda M, Denham, Glenn T, Furuta, Marc E, Rothenberg, James W, Varni   +22 more
openaire   +2 more sources

Clinical Characteristics of Arginase 1 Deficiency: Natural History Insights From International Clinical Trials. [PDF]

J Inherit Metab Dis
ABSTRACT Arginase 1 deficiency (ARG1‐D) is an ultra‐rare inherited metabolic disorder of the urea cycle, caused by partial or complete loss of arginase 1 function, characterised by hyperargininaemia and a distinct, progressive neurological phenotype. The clinical development programme of pegzilarginase, a recombinant human ARG1 enzyme therapy, provides
Rudebeck M, Braverman N, Chang R, Enns GM, Ghosh A, Gorce M, Karall D, Sharma R, Shelkowitz E, Zori R, McNutt M.   +10 more
europepmc   +2 more sources

The Impact of Raising Children with Barth Syndrome on Parental Health-Related Quality of Life and Family Functioning: Preliminary Reliability and Validity of the PedsQL™ Family Impact Module

Occupational Therapy International, 2023
Objective. This study examined the preliminary reliability and validity of the PedsQL™ Family Impact Module (PedsQL FIM) in families of children with Barth syndrome (BTHS). Method. A total of 72 parents with children or youth between the ages of 5 and 19
Yoonjeong Lim, Ickpyo Hong, Areum Han
doaj   +1 more source

RESULTS OF LIFE QUALITY EVALUATION IN CHILDREN WITH HEPATIC VARIANT OF GLYCOGEN DISEASE

Педиатрическая фармакология, 2013
Glycogen storage disease (glycogenosis) is a common name for a group of hereditary diseases characterized by excessive accumulation of glycogen with normal or altered structure in various organs and tissues, most often – in liver and muscles.
A. N. Surkov, V. V. Chernikov, A. A. Baranov, L. S. Namazova-Baranova, A. S. Potapov, I. V. Vinyarskaya   +5 more
doaj   +1 more source

The reliability of the health related quality of life questionnaire PedsQL 3.0 cancer module in a sample of Swedish children

BMC Pediatrics, 2020
Background The Pediatric Quality of Life Inventory (PedsQL) is a modular instrument, designed to integrate generic and disease specific measures, and includes both self- and proxy-reports.
Peter Sand, Anna Nilsson Kleiberg, Marizela Kljajić, Birgitta Lannering   +3 more
doaj   +1 more source

Life Quality of Pediatric Patient with Dengue Hemorrhagic Fever (DHF) Who Received Crystalloid and Colloid Fluid Treatment in PKU Muhammadiyah Hospital Yogyakarta

Mutiara Medika, 2019
Dengue hemorrhagic fever (DHF) in the community can have an impact of panic, death, and reduced age of hope in the family. Research on the quality of life of DHF pediatric patient who got the treatment of crystalloid and colloid fluids has never been ...
Chotijatun Nasriyah, Dyah Aryani Perwitasari, Nurcholid Umam Kurniawan   +2 more
doaj   +1 more source

Health-related quality of life in Iranian adolescents: a psychometric evaluation of the self-report form of the PedsQL 4.0 and an investigation of gender and age differences

Health and Quality of Life Outcomes, 2021
Background Research on the psychometric properties of the Persian self-report form of the Pediatric Quality of Life Inventory Version 4.0 (PedsQL 4.0) in adolescents has several gaps (e.g., convergent validity) that limit its clinical application and ...
Habib Hadianfard, Behnaz Kiani, Mahla Azizzadeh Herozi, Fatemeh Mohajelin, John T. Mitchell   +4 more
doaj   +1 more source

Validity and reliability of the Italian version of the cardiac quality of life questionnaire for pediatric patients with heart disease (PedsQLTM)

BMC Cardiovascular Disorders, 2021
Background Congenital heart disease (CHD) accounts for nearly a third of all major congenital anomalies. Advances in pediatric cardiology shifted attention from mortality to morbidity and health-related quality of life (HRQOL) of patients with CHD and ...
Teresa Grimaldi Capitello, Francesca Bevilacqua, Roberta Vallone, Anna Maria Dall’Oglio, Francesca Santato, Salvatore Giannico, Giulio Calcagni, Simone Piga, Marta Ciofi degli Atti, Simonetta Gentile, Angela Rossi   +10 more
doaj   +1 more source

Fatigue in pediatric inflammatory bowel disease: Explained by transdiagnostic and disease-focused factors. [PDF]

J Pediatr Gastroenterol Nutr
Abstract Objective Fatigue is highly prevalent in children with inflammatory bowel disease (IBD), even during clinical remission. This suggests a role for transdiagnostic factors—lifestyle, psychological, and social influences not specific to the disease.
Stutvoet MD, Vroegindeweij A, Toonen TZ, Nap-Van der Vlist MM, Hoefnagels JW, van den Berg A, Nijhof SL.   +6 more
europepmc   +2 more sources