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Paediatric rheumatology

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
Cristina Robbiano, Ilenia Infusino, Federica Braga, Alberto Dolci, Mauro Panteghini
BACKGROUND: The morphological examination of urinary sediment (MEUS) is traditionally associated with urinalysis (UA), with workload implications and the need for automation of its execution. METHODS: Considering MEUS as a test requiring specialized knowhow and skill for its execution, since 2005 in our laboratory it is performed for inpatients only upon specific request. Eleven years after, we have analyzed the long-term impact of this approach on the provided service...
September 2018: Giornale Italiano di Nefrologia: Organo Ufficiale Della Società Italiana di Nefrologia
Hermine I Brunner, Alberto Martini, Daniel J Lovell, Nicolino Ruperto
Childhood-onset systemic lupus erythematosus (cSLE) is rare in many regions of the world, including Europe. Access to approved medications for cSLE is currently limited, among others, due to a lack of high-quality evidence from clinical trials. The objectives of the study were to evaluate the current regulatory framework regarding medication approvals, delineate barriers to clinical trial conduct, and strategies to improve access to new medications for cSLE. Relevant methodological and regulatory aspects, epidemiological data, study designs and outcome measures are reviewed, and the results of a survey among Paediatric Rheumatology International Trials Organisation/Pediatric Rheumatology Collaborative Study Group investigators are presented...
September 19, 2018: Annals of the Rheumatic Diseases
Rebecca E Sadun, Laura E Schanberg
The prevalence of paediatric-onset SLE (pSLE) is estimated at 1million people worldwide and accounts for a significant proportion of SLE morbidity, mortality and cost. Patients with pSLE are especially vulnerable during and immediately following transfer from paediatric to adult rheumatology care, when substantial delays in care and increased disease activity are common. Transition is the process through which adolescents and young adults (AYA) develop the skills needed to succeed in the adult healthcare environment, a process that typically takes several years and may span a patient's time in paediatric and adult clinics...
2018: Lupus Science & Medicine
Eldad Ben-Chetrit, Marco Gattorno, Ahmet Gul, Daniel L Kastner, Helen J Lachmann, Isabelle Touitou, Nicolino Ruperto
Autoinflammatory diseases (AIDs) are a relatively new family of disorders, defined about 19 years ago. Some of them are hereditary and some are not. The names given to these diseases do not follow any systematic guidelines, and sometimes the same disorder carries several names. The aim of this study is to refine the definition of AIDs and to provide some conventions for their naming. We focused mainly on monogenetic AIDs. Delphi technique, which enables consensus among a group of experts through internet and mail communication and questionnaires, was employed...
August 12, 2018: Annals of the Rheumatic Diseases
Yoshifumi Tada, Satomi Inokuchi, Akihito Maruyama, Rie Suematsu, Mariko Sakai, Yuri Sadanaga, Nobuyuki Ono, Yojiro Arinobu, Syuichi Koarada
The objectives of this study are to determine whether the 2016 European League Against Rheumatism/American College of Rheumatology/Paediatric Rheumatology International Trials Organization classification criteria for macrophage activation syndrome (MAS) complicating systemic juvenile idiopathic arthritis (SJIA) can be used to identify MAS in patients with adult-onset Still's disease (AOSD). Using laboratory data from 76 AOSD patients with and without MAS, we analyzed the ability of the collective and individual constitutive elements of the 2016 MAS in SJIA criteria and additional laboratory measures to discriminate between AOSD patients with (n = 16) and without (n = 60) MAS...
July 26, 2018: Rheumatology International
Clara Malattia, Mariangela Rinaldi, Alberto Martini
The prognosis of juvenile idiopathic arthritis (JIA) has changed dramatically due to the availability of novel drugs. Prompt diagnosis and treatment are essential to prevent permanent joint damage. As a result, methods to improve JIA diagnosis and prognosis are of high priority to tailor treatment strategies and maximize their efficacy. Musculoskeletal ultrasound and magnetic resonance imaging are more sensitive than clinical examination and radiography in the detection of joint involvement and might play a substantial role to optimize the management of JIA...
August 2018: Expert Review of Clinical Immunology
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