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Pediatric Rheumatology Online Journal

J E McDonagh, K L Shaw, J Prescott, F J Smith, R Roberts, N J Gray
BACKGROUND: Taking medicines as intended is difficult for everybody, but young people going through adolescence have greater problems than adults and younger children. One of the most important things that happen during the teenage years is the development of individual identities, which might not remain constant during this time and can be affected deeply by the diagnosis of a long-term condition. The aim of this study was to examine the relationships between identity and medication use among young people with juvenile arthritis...
October 19, 2016: Pediatric Rheumatology Online Journal
Florence A Aeschlimann, Lars Grosse-Wortmann, Susanne M Benseler, Ronald M Laxer, Diane Hebert, Rae S M Yeung
BACKGROUND: Arterial vessel wall dissection is a rare, life-threatening and rarely described complication in childhood Takayasu Arteritis (cTA). Prevalence and risk factors for arterial dissection in cTA are unknown. We sought to study the prevalence and analyse risk factors for arterial dissection in cTA. FINDINGS: A single center retrospective review of all children with cTA was performed. Patients with arterial dissection at cTA diagnosis were reported in detail and compared to the remaining single center retrospective cohort of children without dissection...
September 22, 2016: Pediatric Rheumatology Online Journal
Anouk Verwoerd, Nienke M Ter Haar, Sytze de Roock, Sebastiaan J Vastert, Debby Bogaert
Juvenile idiopathic arthritis (JIA) is the most common rheumatic disease in childhood. The pathogenesis of JIA is thought to be the result of a combination of host genetic and environmental triggers. However, the precise factors that determine one's susceptibility to JIA remain to be unravelled. The microbiome has received increasing attention as a potential contributing factor to the development of a wide array of immune-mediated diseases, including inflammatory bowel disease, type 1 diabetes and rheumatoid arthritis...
September 20, 2016: Pediatric Rheumatology Online Journal
Elizabeth A Kessler, Ashley K Sherman, Mara L Becker
BACKGROUND: There is a critical shortage of pediatric rheumatologists in the US. Substantial travel to clinics can impose time and monetary burdens on families. The aim of this study was to evaluate the cost of in-person pediatric rheumatology visits for families and determine if telemedicine clinics resulted in time and cost savings. Factors associated with interest in telemedicine were also explored. METHODS: Surveys were offered to parents and guardians of patients in Pediatric Rheumatology follow-up clinics in Kansas City, Missouri, the primary site of in-person care, and at a telemedicine outreach site 160 miles away, in Joplin, Missouri...
September 20, 2016: Pediatric Rheumatology Online Journal
G J F Joyce Bos, Otto T H M Lelieveld, Wineke Armbrust, Pieter J J Sauer, Jan H B Geertzen, Pieter U Dijkstra
BACKGROUND: To compare physical activity (PA) in children with juvenile idiopathic arthritis (JIA) with controls and to analyse the effect of disease specific factors on PA in children with JIA treated according to current treatment regimes. METHODS: PA was measured with a 7-day activity diary and expressed as physical activity level (PAL). Moderate to vigorous physical activity (MVPA) (hours/day) and sedentary time (hours/day) was determined. In children with JIA, medication, the number of swollen and/or painful joints, disease activity, functional ability, pain and well-being was determined...
July 7, 2016: Pediatric Rheumatology Online Journal
Federica Vanoni, Katerina Theodoropoulou, Michaël Hofer
The syndrome of periodic fever, aphthous stomatitis, pharyngitis and cervical adenitis (PFAPA syndrome) is the most common cause of periodic fever in childhood. The current pharmacological treatment includes corticosteroids, which usually are efficacious in the management of fever episodes, colchicine, for the prophylaxis of febrile episodes, and other medication for which efficacy has not been proven so far. Tonsillectomy is an option for selected patients. Usually PFAPA syndrome resolves during adolescence, but there is increasing evidence that this condition may persist into adulthood...
June 27, 2016: Pediatric Rheumatology Online Journal
Isabelle Koné-Paut
BD is a systemic inflammatory disease with a variable vasculitis. Paediatric onset is very rare and carries a strong genetic component. Oral ulcers and fever of unknown origin are frequent at onset and difficult to distinguish from other inflammatory disorders; therefore, expert opinion is still mandatory to recognize the disease early. An international expert consensus has recently proposed new classification criteria for children with BD. The clinical spectrum of BD is heterogeneous and influenced by gender, ethnicity and country of residence...
February 18, 2016: Pediatric Rheumatology Online Journal
Ellen A Lipstein, Daniel J Lovell, Lee A Denson, Sandra C Kim, Charles Spencer, Maria T Britto
BACKGROUND: Parents struggle when making treatment decisions for children with arthritis or other chronic conditions. Understanding their decision-making process is an essential step towards improving the decision-making experience. The objective of this study was to describe parents' information needs and the influences on their decision making about treatment with TNF-α inhibitors. METHODS: Survey domains were developed based on qualitative data and cognitive interviewing...
2016: Pediatric Rheumatology Online Journal
Fabian Speth, Johannes-Peter Haas, Claas H Hinze
BACKGROUND: High-dose intravenous immune globulins (IVIg) are frequently used in refractory juvenile dermatomyositis (JDM) but are often poorly tolerated. High-dose recombinant human hyaluronidase-facilitated subcutaneous immune globulins (fSCIg) allow the administration of much higher doses of immune globulins than conventional subcutaneous immune globulin therapy and may be an alternative to IVIg. The safety and efficacy of fSCIg therapy in JDM is unknown. CASE PRESENTATION: In this retrospective case series, five patients with steroid-refractory severe JDM were treated with high-dose fSCIg due to IVIg adverse effects (severe headaches, nausea, vomiting, difficult venous access)...
2016: Pediatric Rheumatology Online Journal
Roberta Caorsi, Federica Penco, Francesca Schena, Marco Gattorno
The deficiency of Adenosine Deaminase 2 (DADA2) is a new autoinflammatory disease characterised by an early onset vasculopathy with livedoid skin rash associated with systemic manifestations, CNS involvement and mild immunodeficiency.This condition is secondary to autosomal recessive mutations of CECR1 (Cat Eye Syndrome Chromosome Region 1) gene, mapped to chromosome 22q11.1, that encodes for the enzymatic protein adenosine deaminase 2 (ADA2). By now 19 different mutations in CECR1 gene have been detected...
2016: Pediatric Rheumatology Online Journal
Sangeeta Sule, Kevin Fontaine
BACKGROUND: Children with SLE are known to have higher fat mass compared to their peers but there are no published data regarding exercise capacity as measured by cardiovascular endurance and muscle strength. In our pilot study of ten children with SLE, we sought to examine body composition, cardiovascular endurance, and isometric muscle strength. FINDINGS: Ten pediatric SLE patients were studied with a mean age of 15.5 years and 90 % female. Percent body fat above 30 %, the recommended normal level in adolescent females, were found in 89 % of female subjects and 40 % of all participants had lower than the recommended norms of muscle mass for their age/gender...
2016: Pediatric Rheumatology Online Journal
Melissa L Mannion, Fenglong Xie, John Baddley, Lang Chen, Jeffrey R Curtis, Kenneth Saag, Jie Zhang, Timothy Beukelman
BACKGROUND: To investigate the utilization of health care services before and after transfer from pediatric to adult rheumatology care in clinical practice. METHODS: Using US commercial claims data from January 2005 through August 2012, we identified individuals with a JIA diagnosis code from a pediatric rheumatologist followed by any diagnosis code from an adult rheumatologist. Individuals had 6 months observable time before the last pediatric visit and 6 months after the first adult visit...
2016: Pediatric Rheumatology Online Journal
Jennifer Stinson, Sara Ahola Kohut, Paula Forgeron, Khush Amaria, Mary Bell, Miriam Kaufman, Nadia Luca, Stephanie Luca, Lauren Harris, Charles Victor, Lynn Spiegel
BACKGROUND: Adolescents with Juvenile Idiopathic Arthritis (JIA) are at risk for physical, emotional, social and role challenges that negatively impact quality of life. Peer mentoring has been shown to improve positive health behaviours in adolescents with chronic disease while simultaneously providing social support. The objectives of this paper are to examine the feasibility and acceptability of an online peer mentoring program (iPeer2Peer Program) for adolescents with JIA. METHODS: The iPeer2Peer program was examined using a waitlist pilot randomized control trial (RCT)...
2016: Pediatric Rheumatology Online Journal
M R Roderick, R Shah, V Rogers, A Finn, A V Ramanan
BACKGROUND: Chronic recurrent multifocal osteomyelitis (CRMO) is a little known inflammatory bone disease occurring primarily in children and adolescents. Delays in referral and diagnosis may lead to prolonged courses of antibiotics with in-patient care, unnecessary radiation exposure from multiple plain radiographs or bone scans and repeated surgery including bone biopsies. Children (aged < 18 years) diagnosed with CRMO between January 2005 and December 2012, reviewed at Bristol Royal Hospital for Children were included and all available data collected...
2016: Pediatric Rheumatology Online Journal
Lesley M Arnold, Kenneth N Schikler, Lucinda Bateman, Tahira Khan, Lynne Pauer, Pritha Bhadra-Brown, Andrew Clair, Marci L Chew, Joseph Scavone
BACKGROUND: Fibromyalgia (FM) is a common pain condition characterized by widespread musculoskeletal pain and tenderness. Pregabalin is an approved treatment for adults in the United States, but there are no approved treatments for adolescents with FM. METHODS: This was a 15-week, randomized, double-blind, placebo-controlled study and 6-month open-label safety trial of flexible-dose pregabalin (75-450 mg/day) for the treatment of adolescents (12-17 years) with FM...
2016: Pediatric Rheumatology Online Journal
Karine Toupin April, Johanne Higgins, Debbie Ehrmann Feldman
BACKGROUND: Adherence to treatment in children with juvenile idiopathic arthritis (JIA) is associated with better outcomes. Assessing patient adherence in JIA, as well as attitudes and beliefs about prescribed treatments, is important for the clinician in order to optimize patient management. The objective of the current study was to evaluate the psychometric properties of the Parent (proxy-report) Adherence Report Questionnaires (PARQ), which assesses beliefs and behaviors related to adherence to treatments prescribed for JIA...
2016: Pediatric Rheumatology Online Journal
Miika Arvonen, Lillemor Berntson, Tytti Pokka, Tuomo J Karttunen, Paula Vähäsalo, Matthew L Stoll
BACKGROUND: Juvenile idiopathic arthritis is the most common form of chronic arthritis in children. There is mounting evidence that the microbiota may influence the disease. MAIN BODY: Recent observations in several systemic inflammatory diseases including JIA have indicated that abnormalities in the contents of the microbiota may be factors in disease pathogenesis, while other studies in turn have shown that environmental factors impacting the composition of the microbiota, such as delivery mode and early exposure to antibiotics, affect the risk of chronic inflammatory diseases including JIA...
2016: Pediatric Rheumatology Online Journal
Susan T Tran, Staci Thomas, Christopher DiCesare, Megan Pfeiffer, Soumitri Sil, Tracy V Ting, Sara E Williams, Gregory D Myer, Susmita Kashikar-Zuck
BACKGROUND: Adolescents with juvenile fibromyalgia (JFM) tend to be very sedentary and avoid participation in physical activity. A prior study suggested that JFM patients show altered biomechanics compared to healthy adolescents which may make them more prone to pain/injury during exercise. A new intervention combining well established cognitive behavioral therapy (CBT) techniques with specialized neuromuscular exercise -Fibromyalgia Integrative Training for Teens (FIT Teens) was developed and shown to be promising in improving functioning in adolescents with JFM...
2016: Pediatric Rheumatology Online Journal
Rachelle Donn, Chiara De Leonibus, Stefan Meyer, Adam Stevens
Juvenile idiopathic arthritis (JIA) is a clinically diverse and genetically complex autoimmune disease. Currently, there is very limited understanding of the potential underlying mechanisms that result in the range of phenotypes which constitute JIA.The elucidation of the functional relevance of genetic associations with phenotypic traits is a fundamental problem that hampers the translation of genetic observations to plausible medical interventions. Genome wide association studies, and subsequent fine-mapping studies in JIA patients, have identified many genetic variants associated with disease...
2016: Pediatric Rheumatology Online Journal
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2016: Pediatric Rheumatology Online Journal
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