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Quality of life in juvenile idiopathic arthritis

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
Jennifer Stinson, Sara Ahola Kohut, Paula Forgeron, Khush Amaria, Mary Bell, Miriam Kaufman, Nadia Luca, Stephanie Luca, Lauren Harris, Charles Victor, Lynn Spiegel
BACKGROUND: Adolescents with Juvenile Idiopathic Arthritis (JIA) are at risk for physical, emotional, social and role challenges that negatively impact quality of life. Peer mentoring has been shown to improve positive health behaviours in adolescents with chronic disease while simultaneously providing social support. The objectives of this paper are to examine the feasibility and acceptability of an online peer mentoring program (iPeer2Peer Program) for adolescents with JIA. METHODS: The iPeer2Peer program was examined using a waitlist pilot randomized control trial (RCT)...
2016: Pediatric Rheumatology Online Journal
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
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
Rafael Bonamichi-Santos, Mariana Castells
Due to the increase in utilization of chemotherapies and antibodies, drug hypersensitivity reactions have increased dramatically worldwide, preventing the use of first-line therapies and impacting patients' survival and quality of life. Some of the more frequently used medications in cancer include taxanes for ovarian, lung, breast, and prostate cancers. Monoclonal antibodies are used in the treatment of neoplastic, autoimmune, and inflammatory diseases, and their clinical applications are becoming broader...
June 8, 2016: Clinical Reviews in Allergy & Immunology
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
Aimee O Hersh, Parissa K Salimian, Elissa R Weitzman
Patient-reported outcome (PRO) measures provide a valuable window into how patients with juvenile idiopathic arthritis and their parents perceive their functioning, quality of life, and medication side effects in the context of their disease and treatment. Momentum behind adoption of PRO measures is increasing as these patient-relevant tools capture information pertinent to taking a patient-centered approach to health care and research. This article reviews the clinical and research utility of obtaining PROs across domains applicable to the experience of juvenile idiopathic arthritis and summarizes available self-report and parent-proxy PRO measures...
May 2016: Rheumatic Diseases Clinics of North America
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
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...
2016: Pediatric Rheumatology Online Journal
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
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
Boris Hügle, Gerd Horneff
INTRODUCTION: Juvenile idiopathic arthritis is the most frequent chronic rheumatic disease in childhood. Synthetic disease modifying drugs (DMARDs) have been used in its treatment since the 1980s and have led to substantial improvement of quality of life and disease outcome. Recent pharmacological research has focused on newer medications, especially biologic agents. AREAS COVERED: Synthetic DMARDS, especially methotrexate, rightfully remain the first-line treatment of most categories of juvenile arthritis, as attested by several international guidelines...
2016: Expert Opinion on Pharmacotherapy
Wineke Armbrust, Nicole E Siers, Otto T H M Lelieveld, Leonora J Mouton, Jolanda Tuinstra, Pieter Sauer
OBJECTIVE: To perform a systematic review of the current literature on studies related to fatigue in children with JIA. We studied the measurements that were used to assess fatigue and we focused on three outcome measurements, namely, (1) the prevalence of fatigue in JIA patients, (2) the determinants of and associations with fatigue in JIA patients, and (3) the impact of fatigue in JIA patients on daily life. METHODS: A search was conducted in the electronic databases Pubmed and Embase from January 1, 2000 until August 27, 2015...
April 2016: Seminars in Arthritis and Rheumatism
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
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
Alysha J Taxter, E Paul Wileyto, Edward M Behrens, Pamela F Weiss
OBJECTIVE: Although there is increasing reliance on patient-reported outcomes (PRO) for disease management, there is little known about the differences in PRO across juvenile idiopathic arthritis (JIA) categories. The purpose of our study was to assess PRO across JIA categories, including pain, quality of life, and physical function, and to determine clinical factors associated with differences in these measures across categories. METHODS: This was a longitudinal cohort study of patients with JIA at a tertiary care pediatric rheumatology clinic...
October 2015: Journal of Rheumatology
Deborah Hilderson, Philip Moons, Kristien Van der Elst, Koen Luyckx, Carine Wouters, René Westhovens
OBJECTIVE: To investigate the clinical impact of a brief transition programme for young people with JIA. METHODS: The Devices for Optimization of Transfer and Transition of Adolescents with Rheumatic Disorders (DON'T RETARD) project is a mixed method project in which we first conducted a quasi-experimental study employing a one-group pre-test-post-test with a non-equivalent post-test-only comparison group design. In this quantitative study, we investigated clinical outcomes in patients with JIA and their parents who participated in the transition programme (longitudinal analyses)...
January 2016: Rheumatology
Johanne Jeppesen Lomholt, Mikael Thastum, Anne Estmann Christensen, Anne Leegaard, Troels Herlin
BACKGROUND: Pain is still a part of everyday living for several children with juvenile idiopathic arthritis (JIA) despite improvement in treatment. Psychological interventions may contribute to diminish pain complaints and improve well-being in children with JIA. Only few studies have investigated the efficacy of psychological therapy in children with arthritis and with mixed results. The aim of the study was to evaluate the feasibility and preliminary efficacy of a cognitive behavioral therapy group intervention for children with JIA and their parents...
2015: Pediatric Rheumatology Online Journal
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
Amita Aggarwal, Durga Prasanna Misra
Juvenile idiopathic arthritis (JIA) is the most common chronic arthritis of childhood. Currently, it is characterized by seven categories. The enthesitis-related arthritis (ERA) category usually affects boys older than 6 years and presents with lower limb asymmetrical arthritis associated with enthesitis. Later, these children can develop inflammatory lumbosacral pain (IBP). These children are at risk of developing acute anterior uveitis. A recently devised disease activity index, Juvenile Spondyloarthropathy Disease Activity Index (JSpADA), has been validated in retrospective cohorts...
November 2015: Clinical Rheumatology
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