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Quality of life in juvenile idiopathic arthritis

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https://www.readbyqxmd.com/read/28320056/health-related-quality-of-life-in-an-inception-cohort-of-children-with-juvenile-idiopathic-arthritis-a-longitudinal-analysis
#1
Kiem Oen, Jaime Guzman, Brenden Dufault, Lori B Tucker, Natalie J Shiff, Karen Watanabe Duffy, Jennifer J Y Lee, Brian M Feldman, Roberta A Berard, Paul Dancey, Adam M Huber, Rosie Scuccimarri, David A Cabral, Kimberly A Morishita, Suzanne E Ramsey, Alan M Rosenberg, Gilles Boire, Susanne M Benseler, Bianca Lang, Kristin Houghton, Paivi M Miettunen, Gaëlle Chédeville, Deborah M Levy, Alessandra Bruns, Heinrike Schmeling, Elie Haddad, Rae S M Yeung, Ciarán M Duffy
OBJECTIVES: To describe changes in health-related quality of life (HRQL) over time in children with juvenile idiopathic arthritis (JIA), relative to other outcomes; to identify predictors of unfavourable HRQL trajectories. METHODS: Children with JIA in the Research in Arthritis in Canadian Children emphasizing Outcomes (ReACCh-Out) cohort were included. The Juvenile Arthritis Quality of Life Questionnaire (JAQQ, a standardized instrument), health-related Quality of My Life (HRQoML, an instrument based on personal valuations) and JIA core variables were completed serially...
March 20, 2017: Arthritis Care & Research
https://www.readbyqxmd.com/read/28217950/impact-of-uveitis-on-quality-of-life-in-adult-patients-with-juvenile-idiopathic-arthritis
#2
Anne-Mieke J W Haasnoot, Naïlah F M Sint Jago, Janneke Tekstra, Joke H de Boer
OBJECTIVE: To establish the impact of uveitis on the Quality of Life (QOL) in adult patients with juvenile idiopathic arthritis (JIA). METHODS: Adult patients with a history of JIA, with (n=31) or without (n=51) chronic anterior uveitis, were included. Their scores on three validated QOL questionnaires (National Eye Institute Visual Functioning Questionnaire (NEI VFQ-25), Medical Outcomes Study 36-Item Short Form Health Survey (SF-36) and EuroQol-5D (EQ-5D)) were analyzed to find factors that could influence QOL...
February 19, 2017: Arthritis Care & Research
https://www.readbyqxmd.com/read/28146097/parent-and-child-report-of-pain-and-fatigue-in-jia-does-disagreement-between-parent-and-child-predict-functional-outcomes
#3
Amy C Gaultney, Maggie H Bromberg, Mark Connelly, Tracy Spears, Laura E Schanberg
While previous research in juvenile idiopathic arthritis (JIA) has identified discrepancy between parent and child perception of disease-related symptoms such as pain, the significance and impact of this disagreement has not been characterized. We examined the extent to which parent-child discordance in JIA symptom ratings are associated with child functional outcomes. Linear regression and mixed effects models were used to test the effects of discrepancy in pain and fatigue ratings on functional outcomes in 65 dyads, consisting of youth with JIA and one parent...
January 30, 2017: Children
https://www.readbyqxmd.com/read/27994269/health-related-quality-of-life-in-children-with-juvenile-idiopathic-arthritis-child-s-and-parent-s-point-of-view
#4
Małgorzata Mańczak, Lidia Rutkowska-Sak, Filip Raciborski
OBJECTIVES: To assess the quality of life (QoL) of children suffering from juvenile idiopathic arthritis (JIA) in Poland, to compare QoL of children with JIA and healthy children, and to compare children's and parents' assessments of QoL. MATERIAL AND METHODS: The KIDSCREEN-52 questionnaire (children's and parents' version) was used to assess the quality of life. The QoL in JIA patients and healthy peers from European and Polish reference groups was compared by the t-test...
2016: Reumatologia
https://www.readbyqxmd.com/read/27993144/disease-status-reasons-for-discontinuation-and-adverse-events-in-1038-italian-children-with-juvenile-idiopathic-arthritis-treated-with-etanercept
#5
Sara Verazza, Sergio Davì, Alessandro Consolaro, Francesca Bovis, Antonella Insalaco, Silvia Magni-Manzoni, Rebecca Nicolai, Denise Pires Marafon, Fabrizio De Benedetti, Valeria Gerloni, Irene Pontikaki, Francesca Rovelli, Rolando Cimaz, Achille Marino, Francesco Zulian, Giorgia Martini, Serena Pastore, Chiara Sandrin, Fabrizia Corona, Marta Torcoletti, Giovanni Conti, Claudia Fede, Patrizia Barone, Marco Cattalini, Elisabetta Cortis, Luciana Breda, Alma Nunzia Olivieri, Adele Civino, Rosanna Podda, Donato Rigante, Francesco La Torre, Gianfranco D'Angelo, Mauro Jorini, Romina Gallizzi, Maria Cristina Maggio, Rita Consolini, Alessandro De Fanti, Valentina Muratore, Maria Giannina Alpigiani, Nicolino Ruperto, Alberto Martini, Angelo Ravelli
BACKGROUND: Data from routine clinical practice are needed to further define the efficacy and safety of biologic medications in children with juvenile idiopathic arthritis (JIA). The aim of this analysis was to investigate the disease status, reasons for discontinuation and adverse events in Italian JIA patients treated with etanercept (ETN). METHODS: In 2013, all centers of the Italian Pediatric Rheumatology Study Group were asked to make a census of patients given ETN after January 2000...
December 20, 2016: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/27987106/congruence-between-polysomnography-obstructive-sleep-apnea-and-the-pediatric-sleep-questionnaire-fatigue-and-health-related-quality-of-life-in-juvenile-idiopathic-arthritis
#6
Teresa M Ward, Maida Lynn Chen, Carol A Landis, Sarah Ringold, Dean W Beebe, Kenneth C Pike, Carol A Wallace
PURPOSE: To examine the congruence between polysomnography obstructive apnea hypopnea index (OAHI) and parent-reported obstructive sleep apnea (OSA) symptoms in 6- to 11-year-old children with juvenile idiopathic arthritis (JIA) and controls; and to compare fatigue and quality of life in JIA and control children based on OAHI and OSA symptoms. METHODS: Sixty-eight children with JIA and 75 controls and a parent participated. Children underwent one night of polysomnography in a sleep laboratory...
March 2017: Quality of Life Research
https://www.readbyqxmd.com/read/27980015/predicting-which-children-with-juvenile-idiopathic-arthritis-will-have-a-severe-disease-course-results-from-the-reacch-out-cohort
#7
Jaime Guzman, Andrew Henrey, Thomas Loughin, Roberta A Berard, Natalie J Shiff, Roman Jurencak, Susanne M Benseler, Lori B Tucker
OBJECTIVE: We studied an inception cohort of children with juvenile idiopathic arthritis (JIA) to (1) identify distinct disease courses based on changes over 5 years in 5 variables prioritized by patients, parents, and clinicians; and (2) estimate the probability of a severe disease course for each child at diagnosis. METHODS: Assessments of quality of life, pain, medication requirements, patient-reported side effects, and active joint counts were scheduled at 0, 6, 12, 18, 24, 36, 48, and 60 months...
December 15, 2016: Journal of Rheumatology
https://www.readbyqxmd.com/read/27974925/new-pharmacological-strategies-in-rheumatic-diseases
#8
REVIEW
R E Schiotis, A D Buzoianu, D F Mureșanu, S Suciu
Targeting the pathogenic pathway of chronic inflammation represents an unmet challenge for controlling disease activity, preventing functional disability, and maintaining an adequate quality of life in patients with rheumatic diseases. Abatacept, a novel molecule that inhibits co-stimulation signal, induces an inhibitory effect on the T-cells. This will further interfere with the activity of several cell lines, leading to the normalization of the immune response. In the latest years, abatacept has been extensively investigated in studies of rheumatoid arthritis for which it was recently approved as a second line biologic treatment in Romania...
July 2016: Journal of Medicine and Life
https://www.readbyqxmd.com/read/27932265/ottawa-panel-evidence-based-clinical-practice-guidelines-for-structured-physical-activity-in-the-management-of-juvenile-idiopathic-arthritis
#9
REVIEW
Sabrina Cavallo, Lucie Brosseau, Karine Toupin-April, George A Wells, Christine A Smith, Arlanna G Pugh, Jennifer Stinson, Roanne Thomas, Sara Ahmed, Ciarán M Duffy, Prinon Rahman, Inmaculada C Àlvarez-Gallardo, Laurianne Loew, Gino De Angelis, Debbie Ehrmann Feldman, Annette Majnemer, Isabelle J Gagnon, Désirée Maltais, Marie-Ève Mathieu, Glen P Kenny, Susan Tupper, Kristi Whitney-Mahoney, Sarah Bigford
OBJECTIVE: To create guidelines focused on the use of structured physical activity (PA) in the management of juvenile idiopathic arthritis (JIA). DATA SOURCES: A systematic literature search was conducted using the electronic databases Cochrane Central Register of Controlled Trials, MEDLINE (Ovid), EMBASE (Ovid), and Physiotherapy Evidence Database for all studies related to PA programs for JIA from January 1966 until December 2014, and was updated in May 2015...
December 6, 2016: Archives of Physical Medicine and Rehabilitation
https://www.readbyqxmd.com/read/27919265/fatigue-in-patients-with-juvenile-idiopathic-arthritis-relationship-to-perceived-health-physical-health-self-efficacy-and-participation
#10
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/27916882/pain-in-school-patterns-of-pain-related-school-impairment-among-adolescents-with-primary-pain-conditions-juvenile-idiopathic-arthritis-pain-and-pain-free-peers
#11
Anna Monica Agoston, Laura S Gray, Deirdre E Logan
Children with chronic pain frequently experience impairment in the school setting, but we do not yet understand how unique these struggles are to children with primary pain conditions compared to peers with disease-related pain or those without chronic pain symptoms. The objective of this study is to examine school functioning, defined as school attendance rates, overall quality of life in the school setting, and school nurse visits among adolescents with primary pain conditions, those with juvenile idiopathic arthritis (JIA)-related pain, and healthy peers...
November 30, 2016: Children
https://www.readbyqxmd.com/read/27798725/comparisons-of-the-outcomes-between-early-and-late-tocilizumab-treatment-in-systemic-juvenile-idiopathic-arthritis
#12
Thita Pacharapakornpong, Sakda Arj-Ong Vallibhakara, Butsabong Lerkvaleekul, Soamarat Vilaiyuk
Around 40% of systemic juvenile idiopathic arthritis (SJIA) in Thailand is steroid dependent or fails to respond to conventional therapy; therefore, tocilizumab (TCZ), a humanized anti-IL-6 receptor antibody, was indicated in these patients. Due to financial problems, some patients cannot receive TCZ treatment immediately following failure of the conventional treatment occurs, leading to disability and poor quality of life. Therefore, this study focused on the outcomes between early and late TCZ treatment in SJIA patients...
February 2017: Rheumatology International
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
#13
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/27590668/the-ipeer2peer-program-a-pilot-randomized-controlled-trial-in-adolescents-with-juvenile-idiopathic-arthritis
#14
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)...
September 2, 2016: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/27564918/temporomandibular-joint-involvement-is-associated-with-quality-of-life-disability-and-high-disease-activity-in-juvenile-idiopathic-arthritis
#15
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
#16
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/27277133/diagnoses-and-management-of-drug-hypersensitivity-and-anaphylaxis-in-cancer-and-chronic-inflammatory-diseases-reactions-to-taxanes-and-monoclonal-antibodies
#17
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
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
#18
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/27133493/using-patient-reported-outcome-measures-to-capture-the-patient-s-voice-in-research-and-care-of-juvenile-idiopathic-arthritis
#19
REVIEW
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
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
#20
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
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