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Pediatric Rheumatology Online Journal

Olha Halyabar, Margaret H Chang, Michelle L Schoettler, Marc A Schwartz, Ezgi H Baris, Leslie A Benson, Catherine M Biggs, Mark Gorman, Leslie Lehmann, Mindy S Lo, Peter A Nigrovic, Craig D Platt, Gregory P Priebe, Jared Rowe, Robert P Sundel, Neeraj K Surana, Katja G Weinacht, Alison Mann, Jenny Chan Yuen, Patricia Meleedy-Rey, Amy Starmer, Taruna Banerjee, Fatma Dedeoglu, Barbara A Degar, Melissa M Hazen, Lauren A Henderson
BACKGROUND: Hemophagocytic lymphohistiocytosis (HLH) and macrophage activation syndrome (MAS) were historically thought to be distinct entities, often managed in isolation. In fact, these conditions are closely related. A collaborative approach, which incorporates expertise from subspecialties that previously treated HLH/MAS independently, is needed. We leveraged quality improvement (QI) techniques in the form of an Evidence-Based Guideline (EBG) to build consensus across disciplines on the diagnosis and treatment of HLH/MAS...
February 14, 2019: Pediatric Rheumatology Online Journal
Florian Milatz, Jens Klotsche, Martina Niewerth, Nils Geisemeyer, Ralf Trauzeddel, Elisabeth Weißbarth-Riedel, Tilmann Kallinich, Joachim Peitz, Matthias Hartmann, Kirsten Minden
BACKGROUND: Regular school sports can help adolescents achieve the recommended amount of daily physical activity and provide knowledge, attitudes and behavioral skills that are needed in order to adopt and maintain a physically active lifestyle. Furthermore, it reaches all children including those that are at risk for engaging in more sedentary types of behavior. Since adolescents with juvenile idiopathic arthritis (JIA) are less involved in physical and social activities than their healthy peers, the objectives were to (1) estimate the prevalence of participation in school sports among patients with JIA; (2) determine the correlates associated with school sports absenteeism; and (3) investigate whether attendance in school sports has changed in the era of biologics...
February 11, 2019: Pediatric Rheumatology Online Journal
Megan L Curran, Emma E Martin, Erin C Thomas, Rashmi Singh, Saima Armana, Asnia Kauser, Eesha A Zaheer, David D Sherry
BACKGROUND: Of 37 pediatric rheumatology fellowship training programs in the United States, many have three or fewer fellows at a given time, making large-scale assessment of fellow performance difficult. An objective structured clinical examination (OSCE) is a scenario-based simulation method that assesses individual performance, thus indirectly measuring training program effectiveness. This study describes the development and implementation of two national pediatric rheumatology OSCEs and methods used for programmatic improvement...
February 8, 2019: Pediatric Rheumatology Online Journal
Arnold Nagy, Péter Mátrai, Péter Hegyi, Hussain Alizadeh, Judit Bajor, László Czopf, Zoltán Gyöngyi, Zoltán Kiss, Katalin Márta, Mária Simon, Ágnes Lilla Szilágyi, Gábor Veres, Bernadett Mosdósi
BACKGROUND: Juvenile Idiopathic arthritis (JIA) is the most common chronic rheumatic disease in childhood. The diagnosis is based on the underlying symptoms of arthritis with an exclusion of other diseases Biologic agents are increasingly used on the side of disease-modifying anti-rheumatic drugs (DMARD) in JIA treatment. MAIN BODY: The aim of this meta-analysis was to investigate the observed infections in JIA children during tumor necrosis factor (TNF)-alpha inhibitor therapy...
January 18, 2019: Pediatric Rheumatology Online Journal
Karim Asi, Anand Gourishankar, Ankur Kamdar
BACKGROUND: Idiopathic inflammatory myopathies (IIM) are a group of systemic autoimmune disorders primarily affecting skeletal muscle. Pediatric coronary artery dilation is frequently discussed in Kawasaki disease. However, it has yet to be reported in the IIMs or antisynthetase syndrome. We report a unique case of a patient with IIM, antisynthetase syndrome and coronary artery dilation. CASE PRESENTATION: We report an adolescent presenting with joint symptoms, fever, and eye swelling with a clinical diagnosis of Juvenile Dermatomyositis...
January 10, 2019: Pediatric Rheumatology Online Journal
Peter Bale, Vicky Easton, Holly Bacon, Emma Jerman, Laura Watts, Garry Barton, Allan Clark, Kate Armon, Alex J MacGregor
INTRODUCTION: Joint hypermobility is common in childhood and can be associated with musculoskeletal pain and dysfunction. Current management is delivered by a multidisciplinary team, but evidence of effectiveness is limited. This clinical trial aimed to determine whether a structured multidisciplinary, multisite intervention resulted in improved clinical outcomes compared with standard care. METHOD: A prospective randomised, single centre parallel group trial comparing an 8-week individualised multidisciplinary intervention programme (bespoke physiotherapy and occupational therapy in the clinical, home and school environment) with current standard management (advice, information and therapy referral if deemed necessary)...
January 8, 2019: Pediatric Rheumatology Online Journal
Yandie Li, Qi Zheng, Lixia Zou, Jianqiang Wu, Li Guo, Liping Teng, Rongjun Zheng, Lawrence Kwok Leung Jung, Meiping Lu
BACKGROUND: As an acute febrile and inflammatory disease, Kawasaki disease (KD) could develop Kawasaki disease shock syndrome (KDSS) sometimes. However its pathogenesis was still not well known. This study was to learn more about the clinical features and evaluate the role of cytokines in the pathogenesis of KDSS. METHODS: We collected clinical and laboratory data retrospectively for all patients with KDSS(KDSS, n = 27)who were hospitalized at our hospital from Jan 2014 to Oct 2017...
January 5, 2019: Pediatric Rheumatology Online Journal
Amir B Orandi, Vikas R Dharnidharka, Noor Al-Hammadi, Kevin W Baszis
BACKGROUND: Few risk factors have been identified for the development of calcinosis among patients with Juvenile Dermatomyositis, and currently no clinical phenotype has been associated with its development. We analyzed a large database of patients to further elucidate any relationships among patients with and without calcinosis. METHOD: The CARRA legacy registry recruited pediatric rheumatology patients from 55 centers across North America from 2010 through 2014, including over 650 subjects with Juvenile Dermatomyositis...
December 29, 2018: Pediatric Rheumatology Online Journal
Hanne Aaserud Aulie, Mette-Elise Estensen, Anne Marit Selvaag, Vibke Lilleby, Berit Flatø, Svend Aakhus
BACKGROUND: The data on cardiovascular risk and systemic arterial properties in patients with long-lasting juvenile idiopathic arthritis (JIA) is limited. The objective of this study was to describe systemic arterial properties including characteristic impedance (Z0 ), total arterial compliance (C), and peripheral vascular resistance (R) in patients with long-lasting active JIA compared with matched controls, and to assess the relation to JIA disease variables and traditional cardiovascular risk factors...
December 29, 2018: Pediatric Rheumatology Online Journal
Jae Suk Baek, Jeong Jin Yu, Mi Jin Kim, Jihye You, Hyun Ok Jun, Young-Hwue Kim, Jae-Kon Ko
BACKGROUND: Current management guidelines for patients with Kawasaki disease (KD) differ in their recommendations for fever observation times when determining resistance to initial intravenous immunoglobulin (IVIG). This retrospective study assessed coronary artery status in patients with transient fever 24-36 h after the completion of a first IVIG infusion. METHODS: Children with KD treated with IVIG between January 2006 and February 2017 were included. Subjects were divided into three groups according to response following the completion of initial IVIG treatment (Group 1, no fever after 24 h; Group 2, transient fever at 24-36 h; Group 3, others)...
December 29, 2018: Pediatric Rheumatology Online Journal
Paweł Więch, Izabela Sałacińska, Dariusz Bazaliński, Mariusz Dąbrowski
BACKGROUND: Juvenile idiopathic arthritis (JIA) is the most common chronic, systemic autoimmune connective tissue disease diagnosed in children and adolescents. An important aspect of monitoring of children with JIA is a precise assessment of the nutritional status to identify children and adolescents at risk of malnutrition. The aim of the study was to assess the body composition and phase angle in children diagnosed with JIA in comparison to age and sex matched healthy children since there are scarce reports in paediatric patients...
December 27, 2018: Pediatric Rheumatology Online Journal
Gabriele Erbis, Kirstin Schmidt, Sandra Hansmann, Tetiana Sergiichuk, Christine Michler, Jasmin B Kuemmerle-Deschner, Susanne M Benseler
BACKGROUND: Autoinflammatory diseases (AIDs) illnesses of the innate immunity resulting in clinical signs and symptoms of systemic inflammation and loss of organ functions. While pathophysiological mechanisms are heavily studied and increasingly well understood, psychosocial needs are much less explored. The disease impact on the everyday life of patients including school and work is poorly studied. The purpose of the study was to identify the spectrum of unmet needs of children, adolescents and adults living with autoinflammatory disease and their families, to define key unmet needs and strategies and to develop and evaluate a pilot intervention addressing the unmet need "school"...
December 20, 2018: Pediatric Rheumatology Online Journal
Hanna Lythgoe, Beverley Almeida, Joshua Bennett, Chandrika Bhat, Amarpal Bilkhu, Mary Brennan, Samundeeswari Deepak, Pamela Dawson, Despina Eleftheriou, Kathryn Harrison, Daniel Hawley, Eleanor Heaf, Valentina Leone, Ema Long, Sarah Maltby, Flora McErlane, Nadia Rafiq, Athimalaipet V Ramanan, Phil Riley, Satyapal Rangaraj, Giulia Varnier, Nick Wilkinson, Clare E Pain
OBJECTIVE: To describe current United Kingdom practice in assessment and management of patients with juvenile localised scleroderma (JLS) compared to Paediatric Rheumatology European Society (PRES) scleroderma working party recommendations. METHODS: Patients were included if they were diagnosed with JLS and were under the care of paediatric rheumatology between 04/2015-04/2016. Retrospective data was collected in eleven UK centres using a standardised proforma and collated centrally...
December 18, 2018: Pediatric Rheumatology Online Journal
Ju-Yang Jung, Moon-Young Kim, Chang-Hee Suh, Hyoun-Ah Kim
Tocilizumab, an anti-interleukin-6 (IL-6) agent, is indicated as a treatment for several autoimmune or inflammatory diseases, including rheumatoid arthritis and juvenile idiopathic arthritis (JIA). IL-6 plays roles in both immune system dysregulation and inflammation, and thus efforts to extend the utility of tocilizumab in patients with autoinflammatory conditions are ongoing. Here, we survey the literature on the off-label use of tocilizumab in patients with juvenile-onset rheumatic diseases including juvenile systemic lupus erythematosus (SLE), juvenile dermatomyositis (DM), vasculitis, juvenile scleroderma, and other autoinflammatory diseases...
December 14, 2018: Pediatric Rheumatology Online Journal
Melissa Oliver, Tzielan C Lee, Bonnie Halpern-Felsher, Elizabeth Murray, Rebecca Schwartz, Yongdong Zhao
BACKGROUND: Chronic nonbacterial osteomyelitis (CNO) is an autoinflammatory bone disorder that if left untreated can result in bone destruction and severe continuing pain due to persistent inflammation. The impact this chronic disease has on the daily lives of affected children and their families is not well known. The purpose of this study is to understand the disease burden and socioeconomic and psychological impact of CNO from the patients' and families' perspectives and identify areas of improvement for patient care and reduced disease burden based on patients' and families' responses...
December 14, 2018: Pediatric Rheumatology Online Journal
Helen E Foster, Jelena Vojinovic, Tamas Constantin, Alberto Martini, Pavla Dolezalova, Yosef Uziel, E M D Smith, Lovro Lamot, Carine Wouters, Tadej Avcin, Nico Wulffraat
The Paediatric Rheumatology European Society (PReS) has over many years, developed a portfolio of educational activities to address increasing educational needs of workforce and support young clinicians to acquire skills to develop new knowledge and deliver clinical care in the future. These educational activities aim to facilitate growth of paediatric rheumatology and ultimately improve the clinical care for children and families. This article describes the current portfolio of PReS educational activities and their relevance to the international paediatric rheumatology community...
December 7, 2018: Pediatric Rheumatology Online Journal
Frances C Sherratt, Louise Roper, Simon R Stones, Flora McErlane, Matthew Peak, Michael W Beresford, Helen Foster, Athimalaipet V Ramanan, Madeleine Rooney, Eileen Baildam, Bridget Young
BACKGROUND: Patient recruitment can be very challenging in paediatric studies, especially in relatively uncommon conditions, such as juvenile idiopathic arthritis (JIA). However, involving children and young people (CYP) in the design of such trials could promise a more rapid trajectory towards making evidence-based treatments available. Studies involving CYP are advocated in the literature but we are not aware of any early stage feasibility studies that have qualitatively accessed the perspectives of parents and CYP with a long term condition to inform design and conduct of a trial...
December 4, 2018: Pediatric Rheumatology Online Journal
Leslie A Favier, Tracy V Ting, Avani C Modi
BACKGROUND: Non-adherence is a prevalent and modifiable issue in juvenile idiopathic arthritis (JIA) that currently lacks provider-based intervention. Education surrounding disease status is one way in which families remain engaged in their care. Musculoskeletal ultrasound is one such form of demonstrative, real-time education that may impact the way patients and caregivers self-manage their disease. The aims of this study are to 1) assess the feasibility, acceptability and perceived usefulness of musculoskeletal ultrasound as a non-adherence intervention tool and 2) to examine changes in methotrexate adherence in adolescents with JIA following the ultrasound...
November 22, 2018: Pediatric Rheumatology Online Journal
Chandrika S Bhat, Catriona Anderson, Aoibhinn Harbinson, Liza J McCann, Marion Roderick, Adam Finn, Joyce E Davidson, Athimalaipet V Ramanan
OBJECTIVE: To understand the demographics, clinical features and treatment outcomes of Chronic Non-bacterial Osteitis (CNO) from three tertiary paediatric rheumatology services in the United Kingdom. METHODS: Children less than 18 years of age diagnosed with CNO between 2001 to 2016 from one tertiary service and between 2001 to 2017 from two tertiary services were included. Clinical notes were reviewed and all pertinent data were collected on a pre-defined proforma...
November 22, 2018: Pediatric Rheumatology Online Journal
Jia Zhu, Gaixiu Su, Jianming Lai, Boya Dong, Min Kang, Shengnan Li, Zhixuan Zhou, Fengqi Wu
OBJECTIVE: To follow up the refractory juvenile dermatomyositis (JDM) with autologous hematopoietic stem cell transplantation (AHSCT) in a long time and to investigate whether AHSCT is effective and safe to treat refractory JDM. METHODS: We collected the AHSCT and follow-up data of three patients with refractory JDM who received autologous peripheral blood CD34+ cell transplantation in our hospital between June 2004 and July 2015. Those data include: hight, weight, routine blood and urine tests, ESR, CK, ALT, AST, LDH, renal functional tests, lymphocyte subpopulations, HRCT and muscle MRI...
November 20, 2018: Pediatric Rheumatology Online Journal
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