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Pediatric Rheumatology Online Journal

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https://www.readbyqxmd.com/read/28888223/assessment-of-transition-readiness-in-adolescents-and-young-adults-with-chronic-health-conditions
#1
Paul T Jensen, Gabrielle V Paul, Stephanie LaCount, Juan Peng, Charles H Spencer, Gloria C Higgins, Brendan Boyle, Manmohan Kamboj, Christopher Smallwood, Stacy P Ardoin
BACKGROUND: Transition from pediatric to adult health care is a vulnerable period for adolescents and young adults. Challenges include paucity of validated measures to assess patients' transition readiness. We evaluated the Transition Readiness Assessment Questionnaire (TRAQ) in adolescents and young adults with rheumatic, gastrointestinal, and endocrine disorders. We examined whether baseline TRAQ scores and other demographic variables predicted transition to adult care over a three year follow up period...
September 9, 2017: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/28865469/comics-as-an-educational-tool-for-children-with-juvenile-idiopathic-arthritis
#2
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/28830457/growth-and-weight-gain-in-children-with-juvenile-idiopathic-arthritis-results-from-the-reacch-out-cohort
#3
Jaime Guzman, Tristan Kerr, Leanne M Ward, Jinhui Ma, Kiem Oen, Alan M Rosenberg, Brian M Feldman, Gilles Boire, Kristin Houghton, Paul Dancey, Rosie Scuccimarri, Alessandra Bruns, Adam M Huber, Karen Watanabe Duffy, Natalie J Shiff, Roberta A Berard, Deborah M Levy, Elizabeth Stringer, Kimberly Morishita, Nicole Johnson, David A Cabral, Maggie Larché, Ross E Petty, Ronald M Laxer, Earl Silverman, Paivi Miettunen, Anne-Laure Chetaille, Elie Haddad, Lynn Spiegel, Stuart E Turvey, Heinrike Schmeling, Bianca Lang, Janet Ellsworth, Suzanne E Ramsey, Johannes Roth, Sarah Campillo, Susanne Benseler, Gaëlle Chédeville, Rayfel Schneider, Shirley M L Tse, Roxana Bolaria, Katherine Gross, Debbie Feldman, Bonnie Cameron, Roman Jurencak, Jean Dorval, Claire LeBlanc, Claire St Cyr, Michele Gibbon, Rae S M Yeung, Ciarán M Duffy, Lori B Tucker
BACKGROUND: With modern treatments, the effect of juvenile idiopathic arthritis (JIA) on growth may be less than previously reported. Our objective was to describe height, weight and body mass index (BMI) development in a contemporary JIA inception cohort. METHODS: Canadian children newly-diagnosed with JIA 2005-2010 had weight and height measurements every 6 months for 2 years, then yearly up to 5 years. These measurements were used to calculate mean age- and sex-standardized Z-scores, and estimate prevalence and cumulative incidence of growth impairments, and the impact of disease activity and corticosteroids on growth...
August 22, 2017: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/28830446/autoimmune-phenotype-with-type-i-interferon-signature-in-two-brothers-with-ada2-deficiency-carrying-a-novel-cecr1-mutation
#4
Andrea Skrabl-Baumgartner, Barbara Plecko, Wolfgang M Schmidt, Nadja König, Michael Hershfield, Ursula Gruber-Sedlmayr, Min Ae Lee-Kirsch
BACKGROUND: Loss-of-function CECR1 mutations cause polyarteritis nodosa (PAN) with childhood onset, an autoinflammatory disorder without significant signs of autoimmunity. Herein we describe the unusual presentation of an autoimmune phenotype with constitutive type I interferon activation in siblings with adenosine deaminase 2 (ADA2) deficiency. CASE PRESENTATION: We describe two siblings with early-onset recurrent strokes, arthritis, oral ulcers, discoid rash, peripheral vascular occlusive disease and high antinuclear antibody titers...
August 22, 2017: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/28821293/incidence-and-predictors-of-uveitis-in-juvenile-idiopathic-arthritis-in-a-nordic-long-term-cohort-study
#5
Ellen Nordal, Veronika Rypdal, Terje Christoffersen, Kristiina Aalto, Lillemor Berntson, Anders Fasth, Troels Herlin, Susan Nielsen, Suvi Peltoniemi, Bjørn Straume, Marek Zak, Marite Rygg
BACKGROUND: The incidence of uveitis associated with juvenile idiopathic arthritis (JIA) varies around the world. Our aim was to investigate the incidence and predictors of uveitis in a Nordic population-based cohort. METHODS: Consecutive JIA cases from defined geographical areas in Denmark, Finland, Sweden and Norway with disease onset between January 1997 to June 2000 were followed for median 98 months in this prospective longitudinal cohort study. Potential clinical and immunological predictors of uveitis were identified with logistic regression analysis...
August 18, 2017: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/28797267/joint-cartilage-thickness-and-automated-determination-of-bone-age-and-bone-health-in-juvenile-idiopathic-arthritis
#6
Marinka Twilt, Dan Pradsgaard, Anne Helene Spannow, Arne Horlyck, Carsten Heuck, Troels Herlin
BACKGROUND: BoneXpert is an automated method to calculate bone maturation and bone health index (BHI) in children with juvenile idiopathic arthritis (JIA). Cartilage thickness can also be seen as an indicator for bone health and arthritis damage. The objective of this study was to evaluate the relation between cartilage thickness, bone maturation and bone health in patients with JIA. METHODS: Patients with JIA diagnosed according ILAR criteria included in a previous ultrasonography (US) study were eligible if hand radiographs were taken at the same time as the US examination...
August 10, 2017: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/28784185/immunogenicity-and-safety-of-influenza-vaccination-in-patients-with-juvenile-idiopathic-arthritis-on-biological-therapy-using-the-microneutralization-assay
#7
M S Camacho-Lovillo, A Bulnes-Ramos, W Goycochea-Valdivia, L Fernández-Silveira, E Núñez-Cuadros, O Neth, P Pérez-Romero
BACKGROUND: Seasonal influenza virus vaccination should be considered in all pediatric patients with rheumatic diseases. Few studies have addressed influenza vaccination safety and efficacy in this group. We aim to prospectively evaluate immunogenicity and safety of the trivalent inactivated influenza vaccine including A/H1N1, A/H3N2 and B strains in children with juvenile idiopathic arthritis (JIA) receiving biological therapy. METHODS: Thirty-five children diagnosed with JIA and 6 healthy siblings were included...
August 7, 2017: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/28784161/changes-in-clinical-and-laboratory-features-of-kawasaki-disease-noted-over-time-in-daejeon-korea
#8
Hong-Ryang Kil, Jae-Won Yu, Sung-Churl Lee, Jung-Woo Rhim, Kyung-Yil Lee
BACKGROUND: Kawasaki disease (KD) becomes one of the common diseases in Korea. Changes in clinical features and laboratory findings of KD were evaluated over a period of 10 years. METHODS: We reviewed the medical records of KD patients and compared the clinical and laboratory features of two KD patient groups: those admitted from 2000 to 2004 (group A, 284 cases) and those admitted from 2010 to 2014 (group B, 331 cases). RESULTS: There were a total of 615 KD patients (mean age: 29...
August 7, 2017: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/28784150/clinical-practice-variation-and-need-for-pediatric-specific-treatment-guidelines-among-rheumatologists-caring-for-children-with-anca-associated-vasculitis-an-international-clinician-survey
#9
Clara Westwell-Roper, Joanna M Lubieniecka, Kelly L Brown, Kimberly A Morishita, Cherry Mammen, Linda Wagner-Weiner, Eric Yen, Suzanne C Li, Kathleen M O'Neil, Sivia K Lapidus, Paul Brogan, Rolando Cimaz, David A Cabral
BACKGROUND: Because pediatric antineutrophil cytoplasmic antibody-associated vasculitis is rare, management generally relies on adult data. We assessed treatment practices, uptake of existing clinical assessment tools, and interest in pediatric treatment protocols among rheumatologists caring for children with granulomatosis with polyangiitis (GPA) and microscopic polyangiitis (MPA). METHODS: A needs-assessment survey developed by an international working group of pediatric rheumatologists and two nephrologists was circulated internationally...
August 7, 2017: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/28778202/cross-sectional-qualitative-thematic-analysis-of-patient-perspectives-of-disease-impact-in-juvenile-idiopathic-arthritis-associated-uveitis
#10
Ethan S Sen, Michelle J Morgan, Rachael MacLeod, Helen Strike, Ann Hinchcliffe, Andrew D Dick, Brinda Muthusamy, Athimalaipet V Ramanan
BACKGROUND: Chronic health conditions in children can have a significant impact on their quality of life. The aim of this study was to explore the subjective experience of children and young people being treated for chronic, non-infectious uveitis associated with a systemic disease such as juvenile idiopathic arthritis. METHODS: A semi-structured interview was conducted with 10 children and young people aged between 6 and 18 years of age and their parents. RESULTS: Preliminary thematic analysis indicated that both the treatment and complications of the disorder have a significant impact on the quality of life and emotional well-being of patients, not only in terms of the discomfort experienced but also in perceptions of social isolation, anxiety and sense of injustice...
August 4, 2017: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/28750667/co-existence-of-blau-syndrome-and-naid-diagnostic-challenges-associated-with-presence-of-multiple-pathogenic-variants-in-nod2-gene-a-case-report
#11
Magdalena Dziedzic, Agata Marjańska, Katarzyna Bąbol-Pokora, Anna Urbańczyk, Elżbieta Grześk, Wojciech Młynarski, Sylwia Kołtan
BACKGROUND: Pediatric autoinflammatory diseases are rare and still poorly understood conditions resulting from defective genetic control of innate immune system, inter alia from anomalies of NOD2 gene. The product of this gene is Nod2 protein, taking part in maintenance of immune homeostasis. Clinical form of resultant autoinflammatory condition depends on NOD2 genotype; usually patients with NOD2 defects present with Blau syndrome, NOD2-associated autoinflammatory disease (NAID) or Crohn's disease...
July 27, 2017: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/28693592/bone-metabolism-and-inflammatory-characteristics-in-14-cases-of-chronic-nonbacterial-osteomyelitis
#12
Yurika Ata, Yutaka Inaba, Hyonmin Choe, Naomi Kobayashi, Jiro Machida, Naoyuki Nakamura, Tomoyuki Saito
BACKGROUND: Chronic nonbacterial osteomyelitis (CNO) is a multifocal autoinflammatory disease that often impairs daily life in children. This study aimed to investigate the bone metabolic and inflammatory characteristics of patients with CNO, and to assess the differences between responders and nonresponders to conservative treatment. METHODS: We investigated the clinical symptoms; laboratory data including inflammatory and bone metabolic biomarkers; and imaging findings from plain radiography, magnetic resonance imaging (MRI), fluorodeoxyglucose-positron emission tomography (FDG-PET), and dual-energy x-ray absorption (DEXA) in 14 patients with CNO...
July 11, 2017: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/28693580/telemedicine-and-other-care-models-in-pediatric-rheumatology-an-exploratory-study-of-parents-perceptions-of-barriers-to-care-and-care-preferences
#13
Danielle R Bullock, Richard K Vehe, Lei Zhang, Colleen K Correll
BACKGROUND: The United States pediatric rheumatology workforce is committed to a mission of providing children access to pediatric rheumatology care. With a limited number and distribution of pediatric rheumatologists, telemedicine has been proposed as one way to meet this mission, yet the adoption of this modality has been slower than expected. The purpose of this study was to explore the parent perspective on barriers to accessing pediatric rheumatology care and to explore the acceptability of telemedicine and other alternative care models...
July 11, 2017: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/28693511/cardiac-findings-in-children-with-juvenile-dermatomyositis-at-disease-presentation
#14
Serdar Cantez, Gil J Gross, Ian MacLusky, Brian M Feldman
BACKGROUND: Juvenile Dermatomyositis (JDM) is a pediatric vasculopathy characterized primarily by skin and muscle involvement. Cardiac findings have been reported in children with JDM but have rarely been investigated in detail. METHODS: We aimed to describe the relevant clinical and laboratory cardiac findings of a cohort of patients with JDM, followed at one centre, at disease diagnosis. RESULTS: We performed a retrospective review of 105 patients with JDM, followed from 1991 to 2007...
July 11, 2017: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/28673355/what-do-young-people-with-rheumatic-disease-believe-to-be-important-to-research-about-their-condition-a-uk-wide-study
#15
Suzanne Parsons, Wendy Thomson, Katharine Cresswell, Bella Starling, Janet E McDonagh
BACKGROUND: The involvement of people of all ages including young people in research is now widely advocated but prioritisation of research topics is still driven largely by professional agendas. Evidence from adult literature has reported a mismatch between a researcher and patient generated list of research topics. There have been no studies to date exploring the priorities of young people with long term conditions other than in SLE. The study aimed to explore the research priorities of young people across the UK with respect to rheumatic conditions...
July 3, 2017: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/28629458/methotrexate-induced-nausea-in-the-treatment-of-juvenile-idiopathic-arthritis
#16
REVIEW
Sonja Falvey, Lauren Shipman, Norman Ilowite, Timothy Beukelman
BACKGROUND: Methotrexate is the most commonly used disease modifying antirheumatic drug in the treatment of juvenile idiopathic arthritis and can be effective in controlling disease in many patients. MAIN BODY: A significant proportion of patients experience nausea and vomiting induced by methotrexate therapy, which can lead to decreased quality of life and discontinuation of treatment with methotrexate. Many strategies have been employed in attempts to reduce methotrexate-induced nausea, including folate supplementation, switching from oral to subcutaneous methotrexate, anti-emetic therapy, behavioral therapy, and others...
June 19, 2017: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/28615036/predictors-of-the-response-to-etanercept-in-patients-with-juvenile-idiopathic-arthritis-without-systemic-manifestations-within-12-months-results-of-an-open-label-prospective-study-conducted-at-the-national-scientific-and-practical-center-of-children-s-health
#17
Ekaterina I Alexeeva, Leyla S Namazova-Baranova, Tatyana M Bzarova, Saniya I Valieva, Rina V Denisova, Tatyana V Sleptsova, Kseniya B Isaeva, Alexandra M Chomahidze, Nikolay I Taibulatov, Anna N Fetisova, Anna V Karaseva, Alexandr A Baranov
BACKGROUND: The aim of this study was to investigate the efficacy of etanercept treatment and to identify predictors of response to therapy within 12 months in patients with juvenile idiopathic arthritis (JIA) without systemic manifestations. METHODS: A total of 197 juvenile patients were enrolled in this study. Response to therapy was assessed using the ACRPedi 30/50/70/90 criteria, the Wallace criteria, and the Juvenile Arthritis Disease Activity Score 71 (JADAS-71)...
June 14, 2017: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/28610606/biologic-therapies-for-refractory-juvenile-dermatomyositis-five-years-of-experience-of-the-childhood-arthritis-and-rheumatology-research-alliance-in-north-america
#18
C H Spencer, K Rouster-Stevens, H Gewanter, G Syverson, R Modica, K Schmidt, H Emery, C Wallace, S Grevich, K Nanda, Y D Zhao, S Shenoi, S Tarvin, S Hong, C Lindsley, J E Weiss, M Passo, K Ede, A Brown, K Ardalan, W Bernal, M L Stoll, B Lang, R Carrasco, C Agaiar, L Feller, H Bukulmez, R Vehe, H Kim, H Schmeling, D Gerstbacher, M Hoeltzel, B Eberhard, R Sundel, S Kim, A M Huber, A Patwardhan
BACKGROUND: The prognosis of children with juvenile dermatomyositis (JDM) has improved remarkably since the 1960's with the use of corticosteroid and immunosuppressive therapy. Yet there remain a minority of children who have refractory disease. Since 2003 the sporadic use of biologics (genetically-engineered proteins that usually are derived from human genes) for inflammatory myositis has been reported. In 2011-2016 we investigated our collective experience of biologics in JDM through the Childhood Arthritis and Rheumatology Research Alliance (CARRA)...
June 13, 2017: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/28599656/transitional-care-for-rheumatic-conditions-in-europe-current-clinical-practice-and-available-resources
#19
Daniel Clemente, Leticia Leon, Helen Foster, Loreto Carmona, Kirsten Minden
OBJECTIVE: To assess European pediatric rheumatology providers' current clinical practices and resources used in the transition from child-centered to adult-oriented care. METHODS: European pediatric rheumatologists were invited to complete a 17-item anonymized e-survey assessing current transition practices, transition policy awareness, and needs in advance of the publication of EULAR/PReS recommendations on transition. RESULTS: The response rate was 121/276 (44%), including responses from 115 centers in 22 European Union countries...
June 9, 2017: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/28583183/design-and-implementation-of-a-decision-aid-for-juvenile-idiopathic-arthritis-medication-choices
#20
William B Brinkman, Ellen A Lipstein, Janalee Taylor, Pamela J Schoettker, Katherine Naylor, Karla Jones, Sheetal S Vora, Catherine C Mims, Elizabeth Roth-Wojcicki, Beth Gottlieb, Nancy Griffin, Carole Lannon, Esi Morgan
BACKGROUND: Randomized trials have demonstrated the efficacy of patient decision aids to facilitate shared decision making in clinical situations with multiple medically reasonable options for treatment. However, little is known about how best to implement these tools into routine clinical practice. In addition, reliable implementation of decision aids has been elusive and spread within pediatrics has been slow. We sought to develop and reliably implement a decision aid for treatment of children with juvenile idiopathic arthritis...
June 5, 2017: Pediatric Rheumatology Online Journal
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