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Quality of life in juvenile idiopathic arthritis

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https://www.readbyqxmd.com/read/29773271/juvenile-idiopathic-arthritis-associated-uveitis
#1
REVIEW
Ethan S Sen, A V Ramanan
Juvenile idiopathic arthritis (JIA) is the commonest rheumatic disease in children and JIA-associated uveitis its most frequent extra-articular manifestation. The uveitis is potentially sight-threatening and thus carries a considerable risk of morbidity with associated reduction in quality of life. The commonest form of uveitis seen in association with JIA is chronic anterior uveitis, which is almost always asymptomatic in the initial stages. Therefore, screening for JIA-associated uveitis in at-risk patients is essential...
August 2017: Best Practice & Research. Clinical Rheumatology
https://www.readbyqxmd.com/read/29766249/imaging-of-temporomandibular-joint-abnormalities-in-juvenile-idiopathic-arthritis-with-a-focus-on-developing-a-magnetic-resonance-imaging-protocol
#2
REVIEW
Elka Miller, Emilio J Inarejos Clemente, Nikolay Tzaribachev, Saurabh Guleria, Mirkamal Tolend, Arthur B Meyers, Thekla von Kalle, Jennifer Stimec, Bernd Koos, Simone Appenzeller, Linda Z Arvidsson, Eva Kirkhus, Andrea S Doria, Christian J Kellenberger, Tore A Larheim
Inflammation and damage in the temporomandibular joint (TMJ) often develop without clinical symptoms but can lead to severe facial growth abnormalities and impaired health-related quality of life, making early diagnosis of TMJ changes crucial to identify. Inflammatory and osteochondral changes detectable through magnetic resonance imaging (MRI) occur in TMJs of approximately 40% of children with juvenile idiopathic arthritis (JIA), and no other imaging modality or physical method of examination can reliably detect these changes...
June 2018: Pediatric Radiology
https://www.readbyqxmd.com/read/29686977/a-prototype-exercise-empowerment-mobile-video-game-for-children-with-cancer-and-its-usability-assessment-developing-digital-empowerment-interventions-for-pediatric-diseases
#3
Carol S Bruggers, Sabrina Baranowski, Mathew Beseris, Rachel Leonard, Derek Long, Elizabeth Schulte, Ashton Shorter, Rowan Stigner, Clinton C Mason, Alisa Bedrov, Ian Pascual, Grzegorz Bulaj
Background: Medical advances continue to improve morbidity and mortality of serious pediatric diseases, including cancer, driving research addressing diminished physical and psychological quality of life in children with these chronic conditions. Empowerment enhances resilience and positively influences health, disease, and therapy understanding. We describe the development and usability assessment of a prototype Empower Stars! mobile video game grounded in behavioral and exercise theories with the purpose of coupling physical exercise with empowerment over disease in children with cancer...
2018: Frontiers in Pediatrics
https://www.readbyqxmd.com/read/29673367/comparing-the-importance-of-quality-measurement-themes-in-juvenile-idiopathic-inflammatory-myositis-between-patients-and-families-and-healthcare-professionals
#4
Heather O Tory, Ruy Carrasco, Thomas Griffin, Adam M Huber, Philip Kahn, Angela Byun Robinson, David Zurakowski, Susan Kim
BACKGROUND: A standardized set of quality measures for juvenile idiopathic inflammatory myopathies (JIIM) is not in use. Discordance has been shown between the importance ascribed to quality measures between patients and families and physicians. The objective of this study was to assess and compare the importance of various aspects of high quality care to patients with JIIM and their families with healthcare providers, to aid in future development of comprehensive quality measures. METHODS: Surveys were developed by members of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Juvenile Dermatomyositis Workgroup through a consensus process and administered to patients and families through the CureJM Foundation and to healthcare professionals through CARRA...
April 19, 2018: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/29645010/adding-patient-reported-outcomes-to-a-multisite-registry-to-quantify-quality-of-life-and-experiences-of-disease-and-treatment-for-youth-with-juvenile-idiopathic-arthritis
#5
Elissa R Weitzman, Lauren E Wisk, Parissa K Salimian, Kara M Magane, Fatma Dedeoglu, Aimee O Hersh, Yukiko Kimura, Kenneth D Mandl, Sarah Ringold, Marc Natter
Background: Children with Juvenile Idiopathic Arthritis (JIA) often have poor health-related quality of life (HRQOL) despite advances in treatment. Patient-centered research may shed light on how patient experiences of treatment and disease contribute to HRQOL, pinpointing directions for improving care and enhancing outcomes. Methods: Parent proxies of youth enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry shared patient-reported outcomes about their child's HRQOL and experiences of disease and treatment burden (pain interference, morning stiffness, history of medication side effects and methotrexate intolerance)...
2018: Journal of patient-reported outcomes
https://www.readbyqxmd.com/read/29618462/allogeneic-hematopoietic-stem-cell-transplantation-for-severe-refractory-juvenile-idiopathic-arthritis
#6
Juliana M F Silva, Fani Ladomenou, Ben Carpenter, Sharat Chandra, Petr Sedlacek, Renata Formankova, Vicky Grandage, Mark Friswell, Andrew J Cant, Zohreh Nademi, Mary A Slatter, Andrew R Gennery, Sophie Hambleton, Terence J Flood, Giovanna Lucchini, Robert Chiesa, Kanchan Rao, Persis J Amrolia, Paul Brogan, Lucy R Wedderburn, Julie M Glanville, Rachael Hough, Rebecca Marsh, Mario Abinun, Paul Veys
Patients with juvenile idiopathic arthritis (JIA) can experience a severe disease course, with progressive destructive polyarthritis refractory to conventional therapy with disease-modifying antirheumatic drugs including biologics, as well as life-threatening complications including macrophage activation syndrome (MAS). Allogeneic hematopoietic stem cell transplantation (allo-HSCT) is a potentially curative immunomodulatory strategy for patients with such refractory disease. We treated 16 patients in 5 transplant centers between 2007 and 2016: 11 children with systemic JIA and 5 with rheumatoid factor-negative polyarticular JIA; all were either refractory to standard therapy, had developed secondary hemophagocytic lymphohistiocytosis/MAS poorly responsive to treatment, or had failed autologous HSCT...
April 10, 2018: Blood Advances
https://www.readbyqxmd.com/read/29600947/disease-activity-overweight-physical-activity-and-screen-time-in-a-cohort-of-patients-with-juvenile-idiopathic-arthritis
#7
Gilad Sherman, Dan Nemet, Veronica Moshe, Alessandro Consolaro, Angelo Ravelli, Nicolino Ruperto, Yosef Uziel
OBJECTIVES: Physical activity is an important part of children's health and social development. Juvenile idiopathic arthritis (JIA) can lead to decreased physical activity and quality of life. This study characterised clinical aspects, physical activity rates, obesity, and screen time in a group of JIA patients. METHODS: Ninety-seven JIA patients in the Paediatric Rheumatology Clinic at Meir Medical Center were evaluated over a 6-month period and compared by statistical methods to 98 age-matched healthy controls...
March 21, 2018: Clinical and Experimental Rheumatology
https://www.readbyqxmd.com/read/29600940/the-burden-of-systemic-juvenile-idiopathic-arthritis-for-patients-and-caregivers-an-international-survey-and-retrospective-chart-review
#8
Susan Shenoi, Gerd Horneff, Michal Cidon, Athimalaipet V Ramanan, Yukiko Kimura, Pierre Quartier, Ivan Foeldvari, Andrew Zeft, Kathleen G Lomax, Jill Gregson, Tineke Abma, Sarah Campbell-Hill, Jeffrey Weiss, Dony Patel, Nina Marinsek, Nico Wulffraat
OBJECTIVES: To investigate the burden of systemic juvenile idiopathic arthritis (SJIA) on health-related quality of life (HRQOL) and resource use of patients and caregivers (families) on biologic therapy. METHODS: This international study assessed SJIA burden in patients on biologics, using a caregiver questionnaire and retrospective chart review. Validated measures included: Child Health Questionnaire Parent-Form 50 (CHQ-PF50), 36-Item Short-Form Health Survey (SF-36v2) and Work Productivity and Activity Impairment questionnaire: Specific Health Problem (WPAI:SHP)...
March 21, 2018: Clinical and Experimental Rheumatology
https://www.readbyqxmd.com/read/29556750/the-effect-of-interactive-digital-interventions-on-physical-activity-in-people-with-inflammatory-arthritis-a-systematic-review
#9
REVIEW
Alison J Griffiths, Claire M White, Peter K Thain, Lindsay M Bearne
The aim of this systematic review was to evaluate the evidence from randomised controlled trials (RCTs) evaluating the effectiveness of interactive digital interventions (IDIs) for physical activity (PA) and health related quality of life (HRQoL) in people with Inflammatory Arthritis [rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA) axial Spondyloarthritis (AS) and psoriatic arthritis (PsA)]. Seven electronic databases identified published and unpublished studies. Two reviewers conducted independent data extraction and quality assessment using the Cochrane risk of bias tool (RoB)...
March 19, 2018: Rheumatology International
https://www.readbyqxmd.com/read/29538382/a-systematic-review-of-randomised-controlled-trials-assessing-effectiveness-of-prosthetic-and-orthotic-interventions
#10
Aoife Healy, Sybil Farmer, Anand Pandyan, Nachiappan Chockalingam
BACKGROUND: Assistive products are items which allow older people and people with disabilities to be able to live a healthy, productive and dignified life. It has been estimated that approximately 1.5% of the world's population need a prosthesis or orthosis. OBJECTIVE: The objective of this study was to systematically identify and review the evidence from randomized controlled trials assessing effectiveness and cost-effectiveness of prosthetic and orthotic interventions...
2018: PloS One
https://www.readbyqxmd.com/read/29533755/efficacy-and-safety-of-canakinumab-in-patients-with-still-s-disease-exposure-response-analysis-of-pooled-systemic-juvenile-idiopathic-arthritis-data-by-age-groups
#11
Eugen Feist, Pierre Quartier, Bruno Fautrel, Rayfel Schneider, Paolo Sfriso, Petros Efthimiou, Luca Cantarini, Karine Lheritier, Karolynn Leon, Chetan S Karyekar, Antonio Speziale
OBJECTIVES: To describe the efficacy, safety, and exposure-response relationship of canakinumab in a subgroup of patients with systemic juvenile idiopathic arthritis (SJIA) aged ≥16 years, representative of adult-onset Still's disease (AOSD) patients, and to compare this subgroup with those of children and young adolescents with SJIA by pooling clinical data collected during the development programme of canakinumab. METHODS: Safety and efficacy data on canakinumab-treated patients were pooled from 4 SJIA studies (NCT00426218, NCT00886769, NCT00889863, and NCT00891046)...
March 2, 2018: Clinical and Experimental Rheumatology
https://www.readbyqxmd.com/read/29502236/a-review-of-recent-advances-using-tocilizumab-in-the-treatment-of-rheumatic-diseases
#12
REVIEW
Andrea Rubbert-Roth, Daniel E Furst, Jan Michael Nebesky, Angela Jin, Erhan Berber
Tocilizumab (TCZ) is the first humanized anti-interleukin-6 (IL-6) receptor monoclonal antibody approved for the treatment of patients with rheumatoid arthritis (RA), Castleman's disease, polyarticular and systemic juvenile idiopathic arthritis, and, most recently, giant cell arteritis as well as for the treatment of chimeric antigen receptor T cell therapy-induced cytokine release syndrome. The global clinical development program for TCZ provides a wealth of clinical data on intravenous TCZ, and more recent studies in patients with RA have provided evidence characterizing the role of intravenous TCZ as monotherapy in early disease and led to the introduction of a subcutaneous formulation of TCZ...
June 2018: Rheumatology and Therapy
https://www.readbyqxmd.com/read/29457372/clinical-characteristics-and-factors-associated-with-disability-and-impaired-quality-of-life-in-children-with-juvenile-systemic-sclerosis
#13
Brandi E Stevens, Kathryn S Torok, Suzanne C Li, Nicole Hershey, Megan Curran, Gloria C Higgins, Katharine F Moore, C Egla Rabinovich, Samuel Dodson, Anne M Stevens
OBJECTIVE: To investigate clinical manifestations of juvenile systemic sclerosis (jSSc), including disease characteristics and patient quality of life, through the multinational Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry. METHODS: Subjects with jSSc were prospectively enrolled between 2010 and 2013. Diagnosis of jSSc was determined by the enrolling pediatric rheumatologist, with disease onset required prior to age 18. Collected data included demographics, disease characteristics, medication exposure, and quality of life metrics...
February 18, 2018: Arthritis Care & Research
https://www.readbyqxmd.com/read/29433504/successful-treatment-of-methotrexate-intolerance-in-juvenile-idiopathic-arthritis-using-eye-movement-desensitization-and-reprocessing-treatment-protocol-and-preliminary-results
#14
Lea Höfel, Bruno Eppler, Magdalena Storf, Elizabeth Schnöbel-Müller, Johannes-Peter Haas, Boris Hügle
BACKGROUND: Methotrexate (MTX), commonly used in juvenile idiopathic arthritis (JIA), frequently has to be discontinued due to intolerance with anticipatory and associative gastrointestinal adverse effects. Eye Movement Desensitization and Reprocessing (EMDR) is a psychological method where dysfunctional experiences and memories are reprocessed by recall combined with bilateral eye movements. The objective of this study was to assess efficacy of EMDR for treatment of MTX intolerance in JIA patients...
February 13, 2018: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/29406303/yoga-intervention-for-an-adolescent-with-juvenile-idiopathic-arthritis-a-case-study
#15
Amanda B Feinstein, Lindsey L Cohen, Akihiko Masuda, Anya T Griffin, Kaitlyn L Gamwell, Mukunda T Stiles, Sheila T Angeles-Han, Sampath Prahalad
Juvenile idiopathic arthritis (JIA) is a chronic rheumatic disease associated with pain, stiffness, and psychosocial difficulties. The purpose of this case study was to investigate the impact of a yoga intervention on pain and morning stiffness in an adolescent female with JIA. A secondary aim was to assess the impact of this intervention on self-efficacy, mindfulness, health-related quality of life, and disease activity. A 17-y-old female with JIA participated in 3 yoga groups and home yoga practice with a digital video disc...
January 2018: Advances in Mind-body Medicine
https://www.readbyqxmd.com/read/29096708/family-resilience-and-adaptive-coping-in-children-with-juvenile-idiopathic-arthritis-protocol-for-a-systematic-review
#16
Sophia Saetes, Lisa Hynes, Brian E McGuire, Line Caes
BACKGROUND: This systematic review is the first step in a study investigating the resilience methods and processes in families of children with juvenile idiopathic arthritis. In particular, this review will focus on chronic or persistent pain, as a common symptom of juvenile idiopathic arthritis, which is the most common rheumatic disease in childhood. The experience of persistent pain can add to the functional disability associated with juvenile idiopathic arthritis. Resilience has relevance to all areas of paediatric psychology, and targeted attention to child, sibling, and parent strengths within the context of paediatric chronic pain and juvenile idiopathic arthritis in particular will augment the field on numerous levels...
November 2, 2017: Systematic Reviews
https://www.readbyqxmd.com/read/29029616/short-term-effectiveness-and-experiences-of-a-peer-guided-web-based-self-management-intervention-for-young-adults-with-juvenile-idiopathic-arthritis
#17
Judy Ammerlaan, Harmieke van Os-Medendorp, Nienke de Boer-Nijhof, Lieske Scholtus, Aike A Kruize, Philomine van Pelt, Berent Prakken, Hans Bijlsma
BACKGROUND: A web-based self-management intervention guided by peer-trainers was developed to support young adults' self-management in coping with Juvenile Idiopathic Arthritis (JIA). To investigate its effectiveness, a randomized controlled trial (RCT) was conducted. In addition, the content of the chat and participants' goals were studied to identify underlying processes. METHODS: An RCT with a six-month follow up period was conducted among 72 young adults with JIA, aged between 16 and 25 years old, randomly assigned to the intervention or to the usual care control group...
October 13, 2017: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/28937578/trajectories-of-pain-severity-in-juvenile-idiopathic-arthritis-results-from-the-research-in-arthritis-in-canadian-children-emphasizing-outcomes-cohort
#18
Natalie J Shiff, Susan Tupper, Kiem Oen, Jaime Guzman, Hyun Lim, Chel Hee Lee, Rhonda Bryce, Adam M Huber, Gilles Boire, Paul Dancey, Brian Feldman, Ronald Laxer, Paivi Miettunen, Heinrike Schmeling, Karen Watanabe Duffy, Deborah M Levy, Stuart Turvey, Roxana Bolaria, Alessandra Bruns, David A Cabral, Sarah Campillo, Gaëlle Chédeville, Debbie Ehrmann Feldman, Elie Haddad, Kristin Houghton, Nicole Johnson, Roman Jurencak, Bianca Lang, Maggie Larche, Kimberly Morishita, Suzanne Ramsey, Johannes Roth, Rayfel Schneider, Rosie Scuccimarri, Lynn Spiegel, Elizabeth Stringer, Shirley M Tse, Rae Yeung, Ciarán M Duffy, Lori B Tucker
We studied children enrolled within 90 days of juvenile idiopathic arthritis diagnosis in the Research in Arthritis in Canadian Children Emphasizing Outcomes (ReACCh-Out) prospective inception cohort to identify longitudinal trajectories of pain severity and features that may predict pain trajectory at diagnosis. A total of 1062 participants were followed a median of 24.3 months (interquartile range = 16.0-37.1 months). Latent trajectory analysis of pain severity, measured in a 100-mm visual analogue scale, identified 5 distinct trajectories: (1) mild-decreasing pain (56...
September 18, 2017: Pain
https://www.readbyqxmd.com/read/28865469/comics-as-an-educational-tool-for-children-with-juvenile-idiopathic-arthritis
#19
Amir Mendelson, Noa Rabinowicz, Yonit Reis, Gil Amarilyo, Liora Harel, Philip J Hashkes, Yosef Uziel
BACKGROUND: This study examined whether the comic book Neta and the Medikidz Explain JIA would improve disease-related knowledge and treatment adherence among patients with juvenile idiopathic arthritis (JIA). METHODS: In this prospective cohort study, JIA patients answered 20 multiple-choice knowledge questions about their disease, before and after reading the comic book. Demographic, clinical, health-related quality of life and adherence data were recorded and correlated to the responses...
September 2, 2017: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/28770976/non-steroidal-anti-inflammatory-drugs-nsaids-for-chronic-non-cancer-pain-in-children-and-adolescents
#20
REVIEW
Christopher Eccleston, Tess E Cooper, Emma Fisher, Brian Anderson, Nick Mr Wilkinson
BACKGROUND: Pain is a common feature of childhood and adolescence around the world, and for many young people, that pain is chronic. The World Health Organization guidelines for pharmacological treatments for children's persisting pain acknowledge that pain in children is a major public health concern of high significance in most parts of the world. While in the past pain was largely dismissed and was frequently left untreated, views on children's pain have changed over time, and relief of pain is now seen as important...
August 2, 2017: Cochrane Database of Systematic Reviews
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