scholarly journals O05 Juvenile idiopathic arthritis is core business in adult rheumatology: the case for specialist services

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Rebecca J Nock ◽  
James R Maxwell ◽  
Rachel S Tattersall
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Young Adult ◽  
Disease Activity ◽  
Biologic Treatment ◽  
Evaluation Period ◽  
Adult Disease ◽  
Adult Services ◽  
Advisory Boards ◽  
Specialist Services ◽  
Nice Guidance

Abstract Background/Aims  Juvenile idiopathic arthritis (JIA) is a heterogenous, childhood-onset condition persisting into adulthood in over 50% of people. Recognition of JIA-specific features is poor in adult services, there are no validated disease activity scores for adults with JIA and specialist adult JIA clinics are rare; this leads to under-treatment of adults with JIA. Sheffield Teaching Hospitals (STH) has a mature transition service and well-established young adult clinic (YAC) for 16-25 year olds and older adults with JIA. Here, we evaluate the proportion of our adult rheumatology workload attributable to JIA, the prevalence of JIA subtypes and therapies utilised. Methods  Outpatient attendances in STH rheumatology are coded by diagnosis. The evaluation period was 1.12.2018 to 27.2.2020. We evaluated the number and characteristics of patients in the JIA cohort, producing a database from coded diagnoses and patient records, and analysed this using Microsoft Excel. Local permission was granted. Results  11,520 patients were seen in adult rheumatology in the evaluation period; 9,422 had a coded diagnosis of which 4,915 (52%) had inflammatory arthritis (IA). Assuming a proportional number of the 2,098 non-coded patients had IA (1,090), the adult IA cohort is estimated at 6,005. 304 patients (aged 17-72) with JIA were seen in adult rheumatology, accounting for 5% of the adult IA cohort. 280 (92%) were in the YAC, and 24 (8%) in general rheumatology. 31 (10%) patients had evidence of uveitis. The commonest subtypes of JIA were: 75 polyarticular (25%), 38 enthesitis related (13%) and 37 extended oligoarticular (12%). 64 (21%) patients had no subtype specified. Of the 233 (77%) JIA patients ever treated with methotrexate, 132 (57%) had discontinued due to inefficacy or adverse effects. 175 (58%) patients were on biologic treatment: the commonest therapies were adalimumab (40%, 70 patients) and etanercept (27%, 47 patients). There is evidence of diagnostic relabelling from JIA to other IA to access biologics not approved by NICE. Conclusion  This evaluation uses real-world data, with some data loss due to absent coding, but shows JIA is a small proportion of adult rheumatology. This is a complex group with high biologic use, poor methotrexate tolerance and heterogenous disease phenotypes. Young adults experience specific challenges in adult services and require developmentally appropriate care, for which best evidence confirms young adult clinics are ideal. The majority of people with JIA are in a dedicated young adult service at STH. Biologics are used within NICE guidance, except for a minority where JIA is relabelled as IA to access additional biologics or due to independent funding requests. NICE guidance for JIA is outdated and restrictive. JIA is an adult disease in > 50% and requires specialist services, further research to elucidate validated adult disease activity scores and wider education amongst adult rheumatologists. Disclosure  R.J. Nock: None. J.R. Maxwell: Other; JRM has served on advisory boards for Abbvie, Pfizer, BMS and Lilly and has received speaking honoraria from Pfizer, BMS, Novartis and Lilly. R.S. Tattersall: Other; RST has received speaker fees and educational grants to attend meetings from UCB, AbbVie, Pfizer and Janssen.

Vaccination does not exacerbate juvenile idiopathic arthritis disease activity in a cohort of Dutch patients

2003 ◽  
Vol 28 (05) ◽  
Author(s):  
A Ronaghy ◽  
E Huijssoon ◽  
MA van Rossum ◽  
ABJ Prakken ◽  
GT Rijkers ◽  
...  
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Disease Activity

scholarly journals Clinical and psychosocial stress factors are associated with decline in physical activity over time in children with juvenile idiopathic arthritis

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Liane D. Heale ◽  
Kristin M. Houghton ◽  
Elham Rezaei ◽  
Adam D. G. Baxter-Jones ◽  
Susan M. Tupper ◽  
...  
Keyword(s):  
Physical Activity ◽  
Juvenile Idiopathic Arthritis ◽  
Disease Activity ◽  
Psychosocial Stress ◽  
Juvenile Arthritis ◽  
Stress Factors ◽  
Healthy Children ◽  
Newly Diagnosed ◽  
Z Score ◽  
Over Time

Abstract Background Physical activity (PA) patterns in children with juvenile idiopathic arthritis (JIA) over time are not well described. The aim of this study was to describe associations of physical activity (PA) with disease activity, function, pain, and psychosocial stress in the 2 years following diagnosis in an inception cohort of children with juvenile idiopathic arthritis (JIA). Methods In 82 children with newly diagnosed JIA, PA levels, prospectively determined at enrollment, 12 and 24 months using the Physical Activity Questionnaire for Children (PAQ-C) and Adolescents (PAQ-A) raw scores, were evaluated in relation to disease activity as reflected by arthritis activity (Juvenile Arthritis Disease Activity Score (JADAS-71)), function, pain, and psychosocial stresses using a linear mixed model approach. Results in the JIA cohort were compared to normative Pediatric Bone Mineral Accrual Study data derived from healthy children using z-scores. Results At enrollment, PA z-score levels of study participants were lower than those in the normative population (median z-score − 0.356; p = 0.005). At enrollment, PA raw scores were negatively associated with the psychosocial domain of the Juvenile Arthritis Quality of Life Questionnaire (r = − 0.251; p = 0.023). There was a significant decline in PAQ-C/A raw scores from baseline (median and IQR: 2.6, 1.4–3.1) to 24 months (median and IQR: 2.1, 1.4–2.7; p = 0.003). The linear mixed-effect model showed that PAQ-C/A raw scores in children with JIA decreased as age, disease duration, and ESR increased. The PAQ-C/A raw scores of the participants was also negatively influenced by an increase in disease activity as measured by the JADAS-71 (p <  0.001). Conclusion Canadian children with newly diagnosed JIA have lower PA levels than healthy children. The decline in PA levels over time was associated with disease activity and higher disease-specific psychosocial stress.

scholarly journals THU0395 EFFICACY OF IXEKIZUMAB ON DISEASE ACTIVITY AND QUALITY OF LIFE IN PATIENTS WITH ACTIVE NON-RADIOGRAPHIC AXIAL SPONDYLOARTHRITIS AND OBJECTIVE SIGNS OF INFLAMMATION, STRATIFIED BY BASELINE CRP/SACROILIAC JOINT MRI STATUS

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 432-433
Author(s):  
W. P. Maksymowych ◽  
H. Marzo-Ortega ◽  
M. Ǿstergaard ◽  
L. S. Gensler ◽  
J. Ermann ◽  
...  
Keyword(s):  
Ankylosing Spondylitis ◽  
Treatment Group ◽  
Disease Activity ◽  
Sacroiliac Joint ◽  
Axial Spondyloarthritis ◽  
Physical Component Score ◽  
Research Support ◽  
Advisory Boards ◽  
Sf 36 ◽  
Active Sacroiliitis

Background:Ixekizumab (IXE), a high-affinity anti-interleukin-17A monoclonal antibody, is effective in patients (pts) with active non-radiographic axial spondyloarthritis (nr-axSpA), who had elevated C-reactive protein (CRP) and/or active sacroiliitis on magnetic resonance imaging (MRI).1Objectives:To determine if disease activity and patient-reported outcomes at Week 16 were similar between groups after stratifying pts by CRP/sacroiliac joint (SIJ) MRI status at baseline.Methods:COAST-X (NCT02757352) included pts with active nr-axSpA and objective signs of inflammation, i.e. presence of sacroiliitis on MRI (Assessment of Spondyloarthritis International Society [ASAS]/ Outcome Measures in Rheumatology criteria) or elevation of serum CRP (>5.0 mg/L). Pts were randomized 1:1:1 to receive subcutaneous 80 mg IXE every 4 weeks (Q4W) or Q2W, or placebo (PBO). Depending on the baseline values of CRP and MRI SIJ (Spondyloarthritis Research Consortium of Canada [SPARCC] score), pts in the intent-to-treat population (N=239) were divided into 3 subgroups (CRP >5 and MRI ≥2; CRP ≤5 and MRI ≥2; CRP >5 and MRI <2). Logistic regression analysis with treatment, subgroup, and treatment-by-subgroup interaction was used to detect treatment group differences in ASAS40, Ankylosing Spondylitis Disease Activity Score (ASDAS) <2.1 (low disease activity), and Bath Ankylosing Spondylitis Disease Activity Index 50 (BASDAI50) responses at Week 16. Analysis of covariance model with baseline value, treatment, subgroup, and treatment-by-subgroup interaction was used to detect the treatment group difference in change from baseline in Short Form-36 physical component score (SF-36 PCS).Results:The proportion of pts achieving ASAS40 (primary endpoint), ASDAS <2.1, and BASDAI50 (secondary endpoints) was higher in IXE treatment groups compared to PBO at Week 16 (Figure 1). The response rates in IXE-treated subjects were higher in all subgroups (CRP >5 and MRI ≥2; CRP ≤5 and MRI ≥2; CRP >5 and MRI <2) without consistent differences in efficacy between the subgroups. Similarly, pts in the IXE groups showed improvement in SF-36 PCS scores (secondary endpoint) versus pts on PBO at Week 16 (Figure 2).Conclusion:Pts with active nr-axSpA and objective signs of inflammation at baseline who were treated with IXE showed an overall improvement in the signs and symptoms of the disease. The efficacy was not different between pts with both elevated CRP and active sacroiliitis on MRI and pts with either elevated CRP or active sacroiliitis on MRI.References:[1]Deodhar A, et al.Lancet.2020.Disclosure of Interests:Walter P Maksymowych Grant/research support from: Received research and/or educational grants from Abbvie, Novartis, Pfizer, UCB, Consultant of: WPM is Chief Medical Officer of CARE Arthritis Limited, has received consultant/participated in advisory boards for Abbvie, Boehringer, Celgene, Eli-Lilly, Galapagos, Gilead, Janssen, Novartis, Pfizer, UCB, Speakers bureau: Received speaker fees from Abbvie, Janssen, Novartis, Pfizer, UCB., Helena Marzo-Ortega Grant/research support from: Janssen, Novartis, Consultant of: Abbvie, Celgene, Eli Lilly, Janssen, Novartis, Pfizer, UCB, Speakers bureau: Abbvie, Celgene, Eli Lilly, Janssen, Novartis, Pfizer, Takeda, UCB, Mikkel Ǿstergaard Grant/research support from: AbbVie, Bristol-Myers Squibb, Celgene, Merck, and Novartis, Consultant of: AbbVie, Bristol-Myers Squibb, Boehringer Ingelheim, Celgene, Eli Lilly, Hospira, Janssen, Merck, Novartis, Novo Nordisk, Orion, Pfizer, Regeneron, Roche, Sandoz, Sanofi, and UCB, Speakers bureau: AbbVie, Bristol-Myers Squibb, Boehringer Ingelheim, Celgene, Eli Lilly, Hospira, Janssen, Merck, Novartis, Novo Nordisk, Orion, Pfizer, Regeneron, Roche, Sandoz, Sanofi, and UCB, Lianne S. Gensler Grant/research support from: Pfizer, Novartis, UCB, Consultant of: AbbVie, Eli Lilly, GSK, Novartis, UCB, Joerg Ermann Grant/research support from: Boehringer-Ingelheim, Pfizer, Consultant of: Abbvie, Eli Lilly, Janssen, Novartis,Pfizer, Takeda, UCB, Atul Deodhar Grant/research support from: AbbVie, Eli Lilly, GSK, Novartis, Pfizer, UCB, Consultant of: AbbVie, Amgen, Boehringer Ingelheim, Bristol Myer Squibb (BMS), Eli Lilly, GSK, Janssen, Novartis, Pfizer, UCB, Speakers bureau: AbbVie, Amgen, Boehringer Ingelheim, Bristol Myer Squibb (BMS), Eli Lilly, GSK, Janssen, Novartis, Pfizer, UCB, Denis Poddubnyy Grant/research support from: AbbVie, MSD, Novartis, and Pfizer, Consultant of: AbbVie, Bristol-Myers Squibb, Eli Lilly, MSD, Novartis, Pfizer, Roche, UCB, Speakers bureau: AbbVie, Bristol-Myers Squibb, Eli Lilly, MSD, Novartis, Pfizer, Roche, UCB, David Sandoval Shareholder of: Eli Lilly and Company, Employee of: Eli Lilly and Company, Rebecca Bolce Shareholder of: Eli Lilly and Company, Employee of: Eli Lilly and Company, Andris Kronbergs Shareholder of: Eli Lilly and Company, Employee of: Eli Lilly and Company, Soyi Liu Leage Shareholder of: Eli Lilly and Company, Employee of: Eli Lilly and Company, Gabriel Doridot Shareholder of: Eli Lilly and Company, Employee of: Eli Lilly and Company, Vladimir Geneus Shareholder of: Eli Lilly and Company, Employee of: Eli Lilly and Company, Ann Leung: None declared, David Adams Shareholder of: Eli Lilly and Company, Employee of: Eli Lilly and Company, Martin Rudwaleit Consultant of: AbbVie, BMS, Celgene, Janssen, Eli Lilly, MSD, Novartis, Pfizer, Roche, UCB Pharma

scholarly journals Seroprevalence of Antibodies against SARS-CoV-2 in Children with Juvenile Idiopathic Arthritis a Case-Control Study

2021 ◽  
Vol 10 (8) ◽  
pp. 1771
Author(s):  
Violetta Opoka-Winiarska ◽  
Ewelina Grywalska ◽  
Izabela Korona-Glowniak ◽  
Katarzyna Matuska ◽  
Anna Malm ◽  
...  
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Disease Activity ◽  
Disease Activity Score ◽  
Juvenile Arthritis ◽  
Activity Score ◽  
Control Group ◽  
Healthy Children ◽  
Serum Samples ◽  
History Of ◽  
Novel Coronavirus

There is limited data on the effect of the novel coronavirus disease (COVID-19) caused by severe acute respiratory syndrome-coronavirus-2 (SARS-CoV-2) on pediatric rheumatology. We examined the prevalence of antibodies against SARS-CoV-2 in children with juvenile idiopathic arthritis (JIA) and a negative history of COVID-19 and the correlation of the presence of these antibodies with disease activity measured by juvenile arthritis disease activity score (JADAS). In total, 62 patients diagnosed with JIA, under treatment with various antirheumatic drugs, and 32 healthy children (control group) were included. Serum samples were analyzed for inflammatory markers and antibodies and their state evaluated with the juvenile arthritis disease activity score (JADAS). JIA patients do not have a higher seroprevalence of anti-SARS-CoV-2 antibodies than healthy subjects. We found anti-SARS-CoV-2 antibodies in JIA patients who did not have a history of COVID-19. The study showed no unequivocal correlation between the presence of SARS-CoV-2 antibodies and JIA activity; therefore, this relationship requires further observation. We also identified a possible link between patients’ humoral immune response and disease-modifying antirheumatic treatment, which will be confirmed in follow-up studies.

scholarly journals FRI0591 VALIDITY OF THE GERMAN VERSION OF BOTH THE PARENT ADHERENCE REPORT QUESTIONNAIRE (PARC) AND THE CHILD ADHERENCE REPORT QUESTIONNAIRE (CARQ) - DATA OF THE INCEPTION COHORT OF NEWLY DIAGNOSED PATIENTS WITH JUVENILE IDIOPATHIC ARTHRITIS (ICON)

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 901.2-901
Author(s):  
S. Kirchner ◽  
C. Sengler ◽  
J. Klotsche ◽  
I. Liedmann ◽  
M. Niewerth ◽  
...  
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Disease Activity ◽  
Intraclass Correlation ◽  
General Level ◽  
German Version ◽  
Inception Cohort ◽  
Research Support ◽  
Validated Questionnaire ◽  
Parents And Children ◽  
Perceived Helpfulness

Background:Juvenile idiopathic arthritis (JIA) is the most common chronic inflammatory rheumatic disease in childhood. A multimodal treatment is needed to reduce pain, control inflammation and maintain joint functioning. Adherence to prescribed therapies is necessary for an optimal outcome. Measuring adherence in children with JIA and their caregivers by a validated questionnaire provides important information about benefits and problems with treatment.Objectives:To evaluate adherence in JIA patients and to validate the German version of both the parent adherence report questionnaire (PARQ) and the child adherence report questionnaire (CARQ).Methods:The PARQ and CARQ were translated from its original English version into German and cross-culturally adapted. Parents and children completed the PARQ and CARQ 4 years after enrolment in the Inception cohort ICON. These questionnaires measure child ability (by VAS 0-100, 100 = best) related to i) general level of difficulty in following treatment, ii) frequency of following treatment, iii) negative reactions in response to treatment [i)-iii) summarized to child ability total score], iv) perceived helpfulness of treatment, and 4 categorical questions on errors in medication behavior. Reliability was tested by re-administering the questionnaire after a mean of 13 days. Reproducibility was analysed using intraclass correlation coefficients (ICC). VAS scores were correlated with the Pediatric Quality of Life Inventory (PedsQL) treatment scale items for convergent validity, and with sociodemographic parameters for discriminant validity.Results:481 parents and 465 children completed the PARQ and the CARQ, respectively, 56 parents and 37 children took part in the re-test. The mean age at assessment was 10.1±3.7 years, mean disease duration was 4.7±0.8 years. The majority of patients suffered from oligoarthritis (49%), followed by rheumatoid-factor negative polyarthritis (30%). Treatment with a DMARD received 60% (MTX 46%), 28% received a biological drug, 16% both. Disease activity measured by the clinical juvenile arthritis disease activity score-10 (cJADAS-10) was 2.6 ± 3.4 (range 0 – 30, best = 0), functional status was good (mean CHAQ 0.2 ± 0.4). Exercise and splints were prescribed to 57% and 21% of patients, respectively.PARQ/CARQ mean child ability total scores for medication were 73.1 ± 23.3/76.5 ± 24.2, for exercise: 85.6 ± 16.5/90.3 ± 15.0, for splints: 72.9 ± 24.2/82.9 ± 16.5. About a third of parents and children reported any error in medication behavior. Perceived helpfulness was highest for medication (PARQ/CARQ 87.4 ± 20.6/83.6 ± 26.1) and lowest for splints. (PARQ/CARQ 80.8 ± 28.4/73.5 ± 33.6).ICCs related to medication indicated good to excellent concordance (PARQ ICC = 0.69 - 0.96; CARQ ICC = 0.53 - 0.75), to exercise moderate (PARQ ICC = 0.28 - 0.45; CARQ ICC = 0.67 - 0.93) and to splints disparate concordance (PARQ ICC = 0.01 - 0.90, CARQ ICC = 0.86 - 0.93).Scores for medications (PARQ: r 0.06 - 0.38, CARQ: 0.06 - 0.49), exercise (PARQ: r 0.03 - 0.30, CARQ: 0.01 - 0.34) and splints (PARQ: r 0.09 - 0.52, CARQ: 0.11 - 0.62) showed a fair to good correlation with the PedsQL scales. Gender and socioeconomic status were not associated with the level of adherence.Conclusion:The German version of the PARQ and CARQ appears to be a valuable tool to measure adherence in patients with JIA and to evaluate helpfulness of treatments.Acknowledgments:ICON is funded by the Federal Ministry of Research (FKZ:01ER0812)Disclosure of Interests:Sabine Kirchner: None declared, Claudia Sengler: None declared, Jens Klotsche: None declared, Ina Liedmann: None declared, Martina Niewerth: None declared, Daniel Windschall: None declared, Tilmann Kallinich Grant/research support from: Novartis, Consultant of: Sobi, Roche, Novartis, Gerd Horneff Grant/research support from: AbbVie, Chugai, Merck Sharp & Dohme, Novartis, Pfizer, Roche, Speakers bureau: AbbVie, Bayer, Chugai, Merck Sharp & Dohme, Novartis, Pfizer, Roche, Toni Hospach: None declared, Frank Dressler: None declared, J. B. Kuemmerle-Deschner Grant/research support from: Novartis, AbbVie, Sobi, Consultant of: Novartis, AbbVie, Sobi, Kirsten Minden Consultant of: GlaxoSmithKline, Sanofi, Speakers bureau: Roche

Tumor Necrosis Factor-α −308 Genotypes Influence Inflammatory Activity and TNF-α Serum Concentrations in Children with Juvenile Idiopathic Arthritis

2009 ◽  
Vol 36 (4) ◽  
pp. 837-842 ◽  
Author(s):  
ANA FILIPA MOURÃO ◽  
JOANA CAETANO-LOPES ◽  
PAULA COSTA ◽  
HELENA CANHÃO ◽  
MARIA JOSÉ SANTOS ◽  
...  
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Tumor Necrosis Factor ◽  
Disease Activity ◽  
Tumor Necrosis ◽  
Tumor Necrosis Factor Α ◽  
Inflammatory Activity ◽  
Serum Concentrations ◽  
Tnf Α ◽  
Factor Α ◽  
Necrosis Factor

Objective.Considering the relevance of tumor necrosis factor-α (TNF-α) in the pathophysiology of juvenile idiopathic arthritis (JIA), it is likely that polymorphisms in its promoter area may be relevant in disease susceptibility and activity. We investigated if clinical measures of JIA activity and TNF-α serum concentrations were associated with TNF-α −308 genotypes.Methods.Portuguese patients with JIA in 5 pediatric rheumatology centers were recruited consecutively, along with a control group of healthy subjects. Demographic and clinical data and blood samples were collected from each patient. DNA was extracted for analysis of TNF-α gene promoter polymorphisms at position −308 by restriction fragment-length polymorphism.Results.One hundred fourteen patients and 117 controls were evaluated; 57% of patients presented the oligoarticular subtype, 25% the polyarticular subtype, 8% the systemic subtype, and 9% had enthesitis-related arthritis and 5% psoriatic arthritis. Twenty-four percent of the patients presented the −308 GA/AA genotypes and 76% the −308 GG genotype, similar to findings in controls. Patients with the −308 GA/AA genotype had higher degree of functional impairment, erythrocyte sedimentation rate, 100-mm visual analog scale score for disease activity, and TNF-α levels compared to those with the −308 GG genotype.Conclusion.TNF-α −308 GA/AA genotypes were found to be related to higher inflammatory activity and worse measures of disease activity in Portuguese patients with JIA. They were not associated with susceptibility to JIA.

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