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Health related quality of life in juvenile idiopathic arthritis

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https://www.readbyqxmd.com/read/27919265/fatigue-in-patients-with-juvenile-idiopathic-arthritis-relationship-to-perceived-health-physical-health-self-efficacy-and-participation
#1
Wineke Armbrust, Otto H T M Lelieveld, Jolanda Tuinstra, Nico M Wulffraat, G J F Joyce Bos, Jeannette Cappon, Marion A J van Rossum, Pieter J J Sauer, Mariët Hagedoorn
BACKGROUND: Fatigue is common in patients with JIA and affects daily life negatively. We assessed the presence and severity of fatigue in patients with JIA, including factors presumed associated with fatigue (e.g., disease activity, disability, pain, physical activity, exercise capacity, and self-efficacy), and whether fatigue is related to participation in physical education classes, school attendance, and sports frequency. METHODS: The current study used baseline data of 80 patients with JIA (age 8-13) who participated in an intervention aimed at promoting physical activity...
December 6, 2016: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/27696793/internet-program-for-physical-activity-and-exercise-capacity-in-children-with-juvenile-idiopathic-arthritis-a-multicenter-randomized-controlled-trial
#2
Wineke Armbrust, G J F Joyce Bos, Nico M Wulffraat, Marco van Brussel, Jeannette Cappon, Pieter U Dijkstra, Jan H B Geertzen, G Elizabeth Legger, Marion A J van Rossum, Pieter J J Sauer, Otto T H M Lelieveld
Objective To determine the effects of Rheumates@work, an internet-based program supplemented with four group sessions, aimed at improving physical activity (PA), exercise capacity, health-related quality of life (HRQoL), and participation in children with juvenile idiopathic arthritis. Methods Patients were recruited from three pediatric rheumatology centers in the Netherlands for an observer blinded, randomized controlled, multicenter trial. PA level, time spend in rest, light, and moderate-to-vigorous physical activity (MVPA) were recorded in a diary and with an accelerometer, before intervention, after intervention, and at follow-up after 3 and 12 months (intervention group only)...
October 1, 2016: Arthritis Care & Research
https://www.readbyqxmd.com/read/27564918/temporomandibular-joint-involvement-is-associated-with-quality-of-life-disability-and-high-disease-activity-in-juvenile-idiopathic-arthritis
#3
Paula Frid, Ellen Nordal, Francesca Bovis, Gabriella Giancane, Tore A Larheim, Marite Rygg, Denise Pires Marafon, Donato De Angelis, Elena Palmisani, Kevin J Murray, Sheila Oliveira, Gabriele Simonini, Fabrizia Corona, Joyce Davidson, Helen Foster, Michel H Steenks, Berit Flato, Francesco Zulian, Eileen Baildam, Rotraud K Saurenmann, Pekka Lahdenne, Angelo Ravelli, Alberto Martini, Angela Pistorio, Nicolino Ruperto
OBJECTIVES: To evaluate the demographic, disease activity, disability and health-related quality of life (HRQoL) differences between children with juvenile idiopathic arthritis (JIA) and their healthy peers, and between children with JIA with and without clinical temporomandibular joint (TMJ) involvement and its determinants. METHODS: This study is based on a cross-sectional cohort of 3343 children with JIA and 3409 healthy peers, enrolled in the Pediatric Rheumatology International Trials Organisation (PRINTO) health-related quality of life (HRQoL) study or in the methotrexate trial...
August 26, 2016: Arthritis Care & Research
https://www.readbyqxmd.com/read/27484740/socioeconomic-costs-and-health-related-quality-of-life-in-juvenile-idiopathic-arthritis-a-cost-of-illness-study-in-the-united-kingdom
#4
Aris Angelis, Panos Kanavos, Julio López-Bastida, Renata Linertová, Pedro Serrano-Aguilar
BACKGROUND: Juvenile idiopathic arthritis (JIA) refers to a number of rare chronic inflammatory diseases. Although JIA imposes a significant societal burden, limited data are available on the cost of JIA. The study's objective is to quantify the socioeconomic burden of JIA patients in the United Kingdom (UK), along with their health-related quality of life (HRQoL). METHODS: A bottom-up, cross-sectional, cost-of-illness analysis of 23 patients was carried out. To collect data on demographic characteristics, health resource utilization, informal care, productivity losses and HRQoL, questionnaires were administered to and completed by patients or their caregivers...
2016: BMC Musculoskeletal Disorders
https://www.readbyqxmd.com/read/27135404/the-clinical-effectiveness-and-cost-effectiveness-of-abatacept-adalimumab-etanercept-and-tocilizumab-for-treating-juvenile-idiopathic-arthritis-a-systematic-review-and-economic-evaluation
#5
Jonathan Shepherd, Keith Cooper, Petra Harris, Joanna Picot, Micah Rose
BACKGROUND: Juvenile idiopathic arthritis (JIA) is characterised by joint pain, swelling and a limitation of movement caused by inflammation. Subsequent joint damage can lead to disability and growth restriction. Treatment commonly includes disease-modifying antirheumatic drugs (DMARDs), such as methotrexate. Clinical practice now favours newer drugs termed biologic DMARDs where indicated. OBJECTIVE: To assess the clinical effectiveness and cost-effectiveness of four biologic DMARDs [etanercept (Enbrel(®), Pfizer), abatacept (Orencia(®), Bristol-Myers Squibb), adalimumab (Humira(®), AbbVie) and tocilizumab (RoActemra(®), Roche) - with or without methotrexate where indicated] for the treatment of JIA (systemic or oligoarticular JIA are excluded)...
April 2016: Health Technology Assessment: HTA
https://www.readbyqxmd.com/read/27115139/long-term-health-related-quality-of-life-in-german-patients-with-juvenile-idiopathic-arthritis-in-comparison-to-german-general-population
#6
Swaantje Barth, Johannes-Peter Haas, Jenny Schlichtiger, Johannes Molz, Betty Bisdorff, Hartmut Michels, Boris Hügle, Katja Radon
OBJECTIVE: Aims of the study were to investigate health-related quality of life (HRQOL) in adult patients with former diagnosis of Juvenile Idiopathic Arthritis (JIA), to compare their HRQOL with the general population and to identify factors related to a poor outcome. METHODS: In 2012, a cross-sectional survey was performed by mailing a questionnaire to a large cohort of former and current patients of the German Centre for Rheumatology in Children and Adolescents...
2016: PloS One
https://www.readbyqxmd.com/read/27089922/clinical-outcome-measures-in-juvenile-idiopathic-arthritis
#7
REVIEW
Alessandro Consolaro, Gabriella Giancane, Benedetta Schiappapietra, Sergio Davì, Serena Calandra, Stefano Lanni, Angelo Ravelli
Juvenile idiopathic arthritis (JIA), as a chronic condition, is associated with significant disease- and treatment-related morbidity, thus impacting children's quality of life. In order to optimize JIA management, the paediatric rheumatologist has begun to regularly use measurements of disease activity developed, validated and endorsed by international paediatric rheumatology professional societies in an effort to monitor the disease course over time and assess the efficacy of therapeutic interventions in JIA patients...
April 18, 2016: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/27086322/social-economic-costs-and-health-related-quality-of-life-in-patients-with-juvenile-idiopathic-arthritis-in-europe
#8
A Kuhlmann, T Schmidt, M Treskova, J López-Bastida, R Linertová, J Oliva-Moreno, P Serrano-Aguilar, M Posada-de-la-Paz, P Kanavos, D Taruscio, A Schieppati, G Iskrov, M Péntek, C Delgado, J M von der Schulenburg, U Persson, K Chevreul, G Fattore
OBJECTIVE: The aim of this study was to determine the economic burden from a societal perspective and the health-related quality of life (HRQOL) of patients with juvenile idiopathic arthritis (JIA) in Europe. METHODS: We conducted a cross-sectional study of patients with JIA from Germany, Italy, Spain, France, the United Kingdom, Bulgaria, and Sweden. Data on demographic characteristics, healthcare resource utilization, informal care, labor productivity losses, and HRQOL were collected from the questionnaires completed by patients or their caregivers...
April 2016: European Journal of Health Economics: HEPAC: Health Economics in Prevention and Care
https://www.readbyqxmd.com/read/27059807/cost-effectiveness-analysis-of-first-line-treatment-with-biologic-agents-in-polyarticular-juvenile-idiopathic-arthritis
#9
Nadia J Luca, Heather F Burnett, Wendy J Ungar, Myla E Moretti, Timothy Beukelman, Brian M Feldman, Gwen Schwartz, Ahmed M Bayoumi
OBJECTIVE: The optimal timing of biologic agent treatment in polyarticular juvenile idiopathic arthritis (JIA) is unknown. This study evaluated the costs and outcomes of first-line treatment with etanercept (ETN), an anti-tumor necrosis factor (anti-TNF) agent, compared with step-wise therapy in JIA. METHODS: We compared 2 strategies: methotrexate (MTX) plus ETN as first-line therapy (ETN-first) and MTX monotherapy followed by ETN (ETN-second), using a cohort state-transition model of newly diagnosed JIA patients...
April 5, 2016: Arthritis Care & Research
https://www.readbyqxmd.com/read/26653415/the-experience-of-taking-methotrexate-for-juvenile-idiopathic-arthritis-results-of-a-cross-sectional-survey-with-children-and-young-people
#10
Kathleen Mulligan, Lucy R Wedderburn, Stanton Newman
BACKGROUND: Children and young people (CYP) with juvenile idiopathic arthritis (JIA) are known to have impaired health-related quality of life (HRQoL), which is improved significantly for many by treatment with methotrexate (MTX). However, a significant proportion of CYP experience difficulties in taking MTX, which may reduce its potential benefits for HRQoL. The aim of this research was to examine how CYP with JIA perceive MTX treatment and how this relates to HRQoL. METHODS: CYP aged 8-16 years taking MTX for JIA completed an adapted Parent Adherence Report Questionnaire, which contains 100 mm visual analogue scales, to assess difficulty taking MTX, adherence, frequency of negative reactions and helpfulness of MTX...
December 12, 2015: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/26479992/comparing-the-quality-of-life-of-patients-with-hemophilia-and-juvenile-idiopathic-arthritis-in-which-chronic-arthropathy-is-a-common-complication
#11
COMPARATIVE STUDY
Yesim Oymak, Arife Kaygusuz, Aysen Turedi, Yöntem Yaman, Erhan Eser, Duygu Cubukcu, Canan Vergin
INTRODUCTION: Hemophilia is a genetic disorder in which recurrent joint bleeding causes arthropathy. Inflammation and degeneration play roles in the pathogenesis of hemophilic arthropathy. Patients with juvenile idiopathic arthritis (JIA) experience a similar inflammatory degenerative joint disease. A comparison of different patients with common pathogenetic features may identify unique features helpful in terms of the follow-up. AIM: We compared the quality of life (QoL) of patients with hemophilia and JIA, and healthy controls, using a generic QoL scale, Kidscreen and Disabkids Questionnaires (KINDL)...
November 2015: Journal of Pediatric Hematology/oncology
https://www.readbyqxmd.com/read/26255878/oral-health-and-quality-of-life-of-children-and-adolescents-with-juvenile-idiopathic-arthritis-according-to-their-caregivers-perceptions
#12
Débora Santos, Carlos Silva, Marlete Silva
The aim of this study was to assess the correlation between oral health indicators and oral health-related quality of life (OHRQoL) of children and adolescents with juvenile idiopathic arthritis (JIA) according to their caregivers' perceptions. Parents or guardians (mean age, 40.6 years; standard deviation [SD] = 10.97 years) of children and adolescents with JIA (n = 17; mean age, 9.8 years; SD = 2.86) and parents or guardians of healthy children and adolescents (n = 15; mean age, 10.7 years; SD = 2.16) filled the short form of the Brazilian Parental-Caregiver Questionnaire (SF: 13 - B-PCPQ)...
November 2015: Special Care in Dentistry
https://www.readbyqxmd.com/read/26231098/impact-of-juvenile-idiopathic-arthritis-on-quality-of-life-during-transition-period-at-the-era-of-biotherapies
#13
Julien Wipff, Laetitia Sparsa, Anne Lohse, Pierre Quartier, Andre Kahan, Chantal Job Deslandre
OBJECTIVE: Few studies have assessed Health-Related Quality of Life (HR-QoL) in adults following juvenile idiopathic arthritis, and none since the advent of biotherapies. The aim of our study is to assess the impact of juvenile idiopathic arthritis on quality of life in a large transitional cohort, evaluate which factors influence quality of life in juvenile idiopathic arthritis, and determine which questionnaire should be used in practice. METHODS: All consecutive juvenile idiopathic arthritis patients followed during adulthood in a transitional care program were included...
January 2016: Joint, Bone, Spine: Revue du Rhumatisme
https://www.readbyqxmd.com/read/26078219/long-term-quality-of-life-and-functional-outcome-of-patients-with-juvenile-idiopathic-arthritis-in-the-biologic-era-a-longitudinal-follow-up-study-in-the-dutch-arthritis-and-biologicals-in-children-register
#14
Janneke Anink, Femke H M Prince, Maryanne Dijkstra, Marieke H Otten, Marinka Twilt, Rebecca ten Cate, Simone L Gorter, Yvonne Koopman-Keemink, Marion A J van Rossum, Esther P A Hoppenreijs, Lisette W A van Suijlekom-Smit
OBJECTIVE: To carry out a longitudinal investigation of functional outcome, health-related quality of life (HRQoL) and treatment strategies in JIA patients who started etanercept >5 years ago. METHODS: We approached patients whose HRQoL changes were described previously in a subanalysis of the Dutch Arthritis and Biologicals in Children register. Recent disease status, co-morbidities and structural damage were retrieved. Disability and HRQoL were assessed by (Childhood) HAQ [(C)HAQ], Child Health Questionnaire, Short Form 36 and Health Utilities Index Mark 3...
November 2015: Rheumatology
https://www.readbyqxmd.com/read/26037544/using-the-effects-of-youngsters-eyesight-on-quality-of-life-questionnaire-to-measure-visual-outcomes-in-children-with-uveitis
#15
Sheila T Angeles-Han, Steven Yeh, Courtney McCracken, Kirsten Jenkins, Daneka Stryker, Erica Myoung, Larry B Vogler, Kelly Rouster-Stevens, Scott R Lambert, Melanie J Harrison, Sampath Prahalad, Carolyn Drews-Botsch
OBJECTIVE: The Effects of Youngsters' Eyesight on Quality of Life (EYE-Q) is a novel measure of vision-related quality of life (QOL) and function in children. We aim to determine the validity of the EYE-Q in childhood uveitis. METHODS: We abstracted medical record data on arthritis and uveitis in a convenience sample of children with juvenile idiopathic arthritis (JIA) and/or uveitis. In addition to the EYE-Q, parents and patients completed questionnaires on overall QOL (Pediatric Quality of Life Inventory [PedsQL]), and physical functioning (Childhood Health Assessment Questionnaire [C-HAQ])...
November 2015: Arthritis Care & Research
https://www.readbyqxmd.com/read/25661982/socio-economic-burden-of-rare-diseases-a-systematic-review-of-cost-of-illness-evidence
#16
REVIEW
Aris Angelis, David Tordrup, Panos Kanavos
Cost-of-illness studies, the systematic quantification of the economic burden of diseases on the individual and on society, help illustrate direct budgetary consequences of diseases in the health system and indirect costs associated with patient or carer productivity losses. In the context of the BURQOL-RD project ("Social Economic Burden and Health-Related Quality of Life in patients with Rare Diseases in Europe") we studied the evidence on direct and indirect costs for 10 rare diseases (Cystic Fibrosis [CF], Duchenne Muscular Dystrophy [DMD], Fragile X Syndrome [FXS], Haemophilia, Juvenile Idiopathic Arthritis [JIA], Mucopolysaccharidosis [MPS], Scleroderma [SCL], Prader-Willi Syndrome [PWS], Histiocytosis [HIS] and Epidermolysis Bullosa [EB])...
July 2015: Health Policy
https://www.readbyqxmd.com/read/25647996/-chronic-disease-and-health-condition-prevention-in-childhood-2nd-part-emphases-from-the-14th-symposium-of-preventive-pediatrics
#17
EDITORIAL
Maja Batinica, Josip Grgurić, Filip Jadrijević-Cvrlje
Chronically ill children nowdays in developed countries are more prevalent than before, and thanks to modern therapeutic modalities more children are surviving into adulthood. Increased survival cannot be assumed to be associated with increased quality of life. With the chronically ill child holistic approach is important, which incorporates not only realisation of the highest possible standards in diagnostics and treatment, but also special care for disease prevention. All this is very important in so called integrative approach in the care of a chronically ill child, with the aim of achieving as high as possible quality of life and complete social integration...
November 2014: Lijec̆nic̆ki Vjesnik
https://www.readbyqxmd.com/read/25384887/critical-appraisal-of-studies-measuring-quality-of-life-in-juvenile-idiopathic-arthritis
#18
REVIEW
Nikesh Reddy Adunuri, Brian Michael Feldman
OBJECTIVE: To critically evaluate studies purporting to measure quality of life (QOL) or health-related QOL (HRQOL) in juvenile idiopathic arthritis (JIA) by assessing the face validity of studies via a predefined set of criteria based on Gill and Feinstein (1994). METHODS: Systematic review was conducted of studies in Medline, Embase, and PsycInfo purporting to measure QOL or HRQOL in JIA. Studies were evaluated based on a set of 8 yes/no criteria set forth by Gill and Feinstein in 1994...
May 2015: Arthritis Care & Research
https://www.readbyqxmd.com/read/25225279/what-matters-most-for-patients-parents-and-clinicians-in-the-course-of-juvenile-idiopathic-arthritis-a-qualitative-study
#19
COMPARATIVE STUDY
Jaime Guzman, Oralia Gómez-Ramírez, Roman Jurencak, Natalie J Shiff, Roberta A Berard, Ciaran M Duffy, Kiem Oen, Ross E Petty, Susanne M Benseler, Rollin Brant, Lori B Tucker
OBJECTIVE: To assess which clinical features are most important for patients, parents, and clinicians in the course of juvenile idiopathic arthritis (JIA). METHODS: Forty-nine people participated in 6 audience-specific focus group discussions and 112 reciprocal interviews in 3 Canadian cities. Participants included youth with JIA, experienced English- and French-speaking parents, novice parents (<6 mos since diagnosis), pediatric rheumatologists, and allied health professionals...
November 2014: Journal of Rheumatology
https://www.readbyqxmd.com/read/25120411/health-related-quality-of-life-and-parental-perceptions-of-child-vulnerability-among-parents-of-a-child-with-juvenile-idiopathic-arthritis-results-from-a-web-based-survey
#20
COMPARATIVE STUDY
Lotte Haverman, Hedy A van Oers, Heleen Maurice-Stam, Taco W Kuijpers, Martha A Grootenhuis, Marion Aj van Rossum
BACKGROUND: A chronic illness, such as Juvenile Idiopathic Arthritis (JIA), has an impact on the whole family, especially on parents caring for the ill child. Therefore the aim of this study is to evaluate parental Health Related Quality of Life (HRQOL) and parental perceptions of child vulnerability (PPCV) and associated variables in parents of a child with JIA. METHODS: Parents of all JIA patients (0-18 years) in Amsterdam, the Netherlands, were eligible. HRQOL was measured using the TNO-AZL Questionnaire (TAAQOL) and PPCV using the Child Vulnerability Scale (CVS)...
2014: Pediatric Rheumatology Online Journal
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