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Paediatric rheumatology

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
Hermine I Brunner, Michael J Holland, Michael W Beresford, Stacy P Ardoin, Simone Appenzeller, Clovis A Silva, Francisco Flores, Beatrice Goilav, Pinar Ozge Avar Aydin, Scott E Wenderfer, Deborah M Levy, Angelo Ravelli, Raju Khubchandani, Tadej Avcin, Marisa S Klein-Gitelman, Nicolino Ruperto, Brian M Feldman, Jun Ying
OBJECTIVES: To develop a Childhood Lupus Improvement Index (CHILI) as a tool to measure response to therapy in childhood-onset systemic lupus erythematosus (cSLE), with focus on clinically relevant improvement (CRIc SLE ). METHODS: Pediatric nephrology and rheumatology subspecialists (n=213) experienced in cSLE management were invited to define CRIc SLE and rate a total of 433 unique patient-profiles for the presence/absence of CRIc SLE . Patient-profiles included the cSLE core response variables [cSLE-CRVs: global assessment of patient well-being (Patient-global), physician assessment of cSLE activity (MD-global), disease activity index score (here: Systemic Lupus Erythematosus Disease Activity Index), urine protein-to-creatinine ratio (UPCR), Child Health Questionnaire physical summary score (CHQ-PhS)]...
January 25, 2019: Arthritis Care & Research
Pavla Dolezalova, Jordi Anton, Tadej Avcin, Michael W Beresford, Paul A Brogan, Tamas Constantin, Yona Egert, Ivan Foeldvari, Helen E Foster, Veronique Hentgen, Isabelle Kone-Paut, Jasmine B Kuemmerle-Deschner, Pekka Lahdenne, Bo Magnusson, Alberto Martini, Liza McCann, Kirsten Minden, Seza Ozen, Casper Schoemaker, Pierre Quartier, Angelo Ravelli, Ingrida Rumba-Rozenfelde, Nicola Ruperto, Sebastian Vastert, Carine Wouters, Francesco Zulian, Nico M Wulffraat
Objectives: To provide an overview of the paediatric rheumatology (PR) services in Europe, describe current delivery of care and training, set standards for care, identify unmet needs and inform future specialist service provision. Methods: An online survey was developed and presented to national coordinating centres of the Paediatric Rheumatology International Trials Organisation (PRINTO) (country survey) and to individual PR centres (centre and disease surveys) as a part of the European Union (EU) Single Hub and Access point for paediatric Rheumatology in Europe project...
January 21, 2019: Rheumatology
A Heiligenhaus, K Minden, C Tappeiner, H Baus, B Bertram, C Deuter, I Foeldvari, D Föll, M Frosch, G Ganser, M Gaubitz, A Günther, C Heinz, G Horneff, C Huemer, I Kopp, C Lommatzsch, T Lutz, H Michels, T Neß, U Neudorf, U Pleyer, M Schneider, H Schulze-Koops, S Thurau, M Zierhut, H W Lehmann
BACKGROUND: Uveitis in juvenile idiopathic arthritis (JIAU) is frequently associated with the development of complications and visual loss. Topical corticosteroids are the first line therapy, and disease modifying anti-rheumatic drugs (DMARDs) are commonly used. However, treatment has not been standardized. METHODS: Interdisciplinary guideline were developed with representatives from the German Ophthalmological Society, Society for Paediatric Rheumatology, Professional Association of Ophthalmologists, German Society for Rheumatology, parents' group, moderated by the Association of the Scientific Medical Societies in Germany...
December 4, 2018: Seminars in Arthritis and Rheumatism
Joost Swart, Gabriella Giancane, Gerd Horneff, Bo Magnusson, Michael Hofer, Еkaterina Alexeeva, Violeta Panaviene, Brigitte Bader-Meunier, Jordi Anton, Susan Nielsen, Fabrizio De Benedetti, Sylvia Kamphuis, Valda Staņēviča, Maria Tracahana, Laura Marinela Ailioaie, Elena Tsitsami, Ariane Klein, Kirsten Minden, Ivan Foeldvari, Johannes Peter Haas, Jens Klotsche, Anna Carin Horne, Alessandro Consolaro, Francesca Bovis, Francesca Bagnasco, Angela Pistorio, Alberto Martini, Nico Wulffraat, Nicolino Ruperto
BACKGROUND: The availability of methotrexate and the introduction of multiple biological agents have revolutionized the treatment of juvenile idiopathic arthritis (JIA). Several international and national drug registries have been implemented to accurately monitor the long-term safety/efficacy of these agents. This report aims to present the combined data coming from Pharmachild/PRINTO registry and the national registries from Germany (BiKeR) and Sweden. METHODS: Descriptive statistics was used for demographic, clinical data, drug exposure, adverse events (AEs) and events of special interest (ESIs)...
December 27, 2018: Arthritis Research & Therapy
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
Ashwaq AlE'ed, Pinar Ozge Avar Aydin, Nora Al Mutairi, Alhanouf AlSaleem, Hafize Emine Sonmez, Michael Henrickson, Jennifer L Huggins, Seza Ozen, Sulaiman M Al-Mayouf, Hermine I Brunner
Objective: To determine the measurement properties of the Cutaneous Lupus Erythematosus Disease Area and Severity Index (CLASI) and the paediatric adaptation of the Skindex29 (pSkindex27) when used in childhood-onset SLE (cSLE). Methods: Patients with mucocutaneous involvement of cSLE were evaluated at the study entry and 6 months later. Besides the CLASI and pSkindex27, the Pediatric Quality of Life Inventory Generic Core scale (PedsQL-GC), its Rheumatology Module (PedsQL-RM), the SLE Disease Activity Index (SLEDAI) and the SLE Damage Index (SDI) were completed...
2018: Lupus Science & Medicine
Nienke de Graeff, Noortje Groot, Paul Brogan, Seza Ozen, Tadej Avcin, Brigitte Bader-Meunier, Pavla Dolezalova, Brian M Feldman, Isabelle Kone-Paut, Pekka Lahdenne, Stephen D Marks, Liza McCann, Clarissa Pilkington, Angelo Ravelli, Annet van Royen, Yosef Uziel, Bas Vastert, Nico Wulffraat, Sylvia Kamphuis, Michael W Beresford
Objectives: The European initiative Single Hub and Access point for paediatric Rheumatology in Europe (SHARE) aimed to optimize care for children with rheumatic diseases. Systemic vasculitides are very rare in children. Consequently, despite recent advances, paediatric-specific information is sparse. The lack of evidence-based recommendations is an important, unmet need. This study aimed to provide recommendations for diagnosing and treating children with rare forms of childhood systemic vasculitis...
December 7, 2018: Rheumatology
Nienke de Graeff, Noortje Groot, Seza Ozen, Despina Eleftheriou, Tadej Avcin, Brigitte Bader-Meunier, Pavla Dolezalova, Brian M Feldman, Isabelle Kone-Paut, Pekka Lahdenne, Liza McCann, Clarissa Pilkington, Angelo Ravelli, Annet van Royen-Kerkhof, Yosef Uziel, Bas Vastert, Nico Wulffraat, Sylvia Kamphuis, Paul Brogan, Michael W Beresford
Objectives: The European Single Hub and Access point for paediatric Rheumatology in Europe initiative aimed to optimize care for children with rheumatic diseases. Kawasaki disease (KD) is the most common cause of acquired heart disease in children and an important cause of long-term cardiac disease into adulthood. Prompt diagnosis and treatment of KD is difficult due to the heterogeneity of the disease but is crucial for improving outcome. To date, there are no European internationally agreed, evidence-based guidelines concerning the diagnosis and treatment of KD in children...
December 7, 2018: Rheumatology
Jason Palman, Stephanie Shoop-Worrall, Kimme Hyrich, Janet E McDonagh
Juvenile idiopathic arthritis (JIA) is the most common inflammatory joint condition of childhood and represents seven JIA subtypes characterised by distinct clinical and laboratory variables. Genetic and environmental factors are known to influence JIA, although many unanswered questions remain. Measurement of health outcomes in JIA is imperative for both clinical practice and research. Patient-reported outcomes present particular challenges in paediatric rheumatology in view of the importance of collecting reports from both the child/young person and the parent...
April 2018: Best Practice & Research. Clinical Rheumatology
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
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
A Klein, I Becker, K Minden, I Foeldvari, J P Haas, G Horneff
OBJECTIVE: Adalimumab (ADA) has become a valuable treatment option for juvenile idiopathic arthritis (JIA). The importance of combination with methotrexate (MTX) is unclear. METHOD: Data from the German Biologics in Paediatric Rheumatology (BIKER) registry are reported. Response to treatment was analysed using JIA American College of Rheumatology (ACR) scores, 10-joint Juvenile Arthritis Disease Activity Score (JADAS10), and improvement of functional status and ACR inactive disease criteria...
November 9, 2018: Scandinavian Journal of Rheumatology
Grace O'Sullivan, Siobhán O'Higgins, Line Caes, Sophia Saetes, Brian E McGuire, Jennifer Stinson
BACKGROUND: Juvenile Idiopathic Arthritis (JIA) affects over 1000 children and adolescents in Ireland, potentially impacting health-related quality-of-life. Accessible self-management strategies, including Internet-based interventions, can support adolescents in Ireland where specialist rheumatology care is geographically-centralised within the capital city. This study interviewed adolescents with JIA, their parents, and healthcare professionals to (i) explore the self-management needs of Irish adolescents; and (ii) evaluate the acceptability of an adapted version of a Canadian JIA self-management programme (Teens Taking Charge: Managing Arthritis Online, or TTC) for Irish users...
November 8, 2018: Pediatric Rheumatology Online Journal
S A Kerrigan, I B McInnes
PURPOSE OF REVIEW: Given the recent increase in the profile and use of Janus kinase inhibitors (JAKinibs) in adult patients with rheumatic diseases, we aimed to review the current evidence accruing for use in paediatric rheumatology patients. RECENT FINDINGS: Significant advances have been made in the management of rheumatic diseases in the past two decades. The introduction of biologic agents in both adults and children has provided significant improvements to patient outcomes and led to better quality of life...
November 8, 2018: Current Rheumatology Reports
Sezgin Sahin, Duhan Hopurcuoglu, Sule Bektas, Ezgi Belhan, Amra Adrovic, Kenan Barut, Nur Canpolat, Salim Caliskan, Lale Sever, Ozgur Kasapcopur
AIM: To describe clinical manifestations, angiographic findings, treatment, activity and damage of our Takayasu arteritis patients. METHOD: The patients who met European League Against Rheumatism/Paediatric Rheumatology International Trials Organisation/Paediatric Rheumatology European Society classification criteria for childhood-onset Takayasu arteritis were reviewed in a retrospective longitudinal manner from 2002 to 2017. Extent of the disease was assessed by Disease Extent Index for Takayasu Arteritis (DEI...
November 5, 2018: International Journal of Rheumatic Diseases
Raju Khubchandani
No abstract text is available yet for this article.
October 16, 2018: Indian Journal of Pediatrics
Wen Y Ding, Michael W Beresford, Moin A Saleem, Athimalaipet V Ramanan
Stratified medicine in paediatrics is increasingly becoming a reality, as our understanding of disease pathogenesis improves and novel treatment targets emerge. We have already seen some success in paediatrics in targeted therapies such as cystic fibrosis for specific cystic fibrosis transmembrane conductance regulator variants. With the increased speed and decreased cost of processing and analysing data from rare disease registries, we are increasingly able to use a systems biology approach (including '-omics') to screen across populations for molecules and genes of interest...
September 28, 2018: Archives of Disease in Childhood
Catherine D Darker, Gail H Nicolson, Aine Carroll, Joe M Barry
BACKGROUND: A major healthcare reform agenda in Ireland is underway which underpins the establishment of a series of National Clinical Programmes (NCPs), which aim to take an evidence based approach to improve quality, access and value. The current study aimed to determine the enablers and barriers to implementation of the NCPs. METHODS: A qualitative methodology advocated by the Medical Research Council (MRC) framework on conducting process evaluations of complex interventions guided this research...
September 24, 2018: BMC Health Services Research
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