Abstract:
BACKGROUND:JIA-associated uveitis (JIAU) is a serious, sight-threatening disease with significant long-term complications and risk of blindness, even with improved contemporary treatments. The MIWGUC was set up in order to propose specific JIAU activity and response items and to validate their applicability for clinical outcome studies. METHODS:The group consists of 8 paediatric rheumatologists and 7 ophthalmologists. A consensus meeting took place on November 2015 in Barcelona (Spain) with the objective of validating the previously proposed measures. The validation process was based on the results of a prospective open, international, multi-centre, cohort study designed to validate the outcome measures proposed by the initial MIWGUC group meeting in 2012. The meeting used the same Delphi and nominal group technique as previously described in the first paper from the MIWGUC group (Arthritis Care Res 64:1365-72, 2012). Patients were included with a diagnosis of JIA, aged less than 18 years, and with active uveitis or an uveitis flare which required treatment with a disease-modifying anti-rheumatic drug. The proposed outcome measures for uveitis were collected by an ophthalmologist and for arthritis by a paediatric rheumatologist. Patient reported outcome measures were also measured. RESULTS:A total of 82 patients were enrolled into the validation cohort. Fifty four percent (n = 44) had persistent oligoarthritis followed by rheumatoid factor negative polyarthritis (n = 15, 18%). The mean uveitis disease duration was 3.3 years (SD 3.0). Bilateral eye involvement was reported in 65 (79.3%) patients. The main findings are that the most significant changes, from baseline to 6 months, are found in the AC activity measures of cells and flare. These measures correlate with the presence of pre-existing structural complications and this has implications for the reporting of trials using a single measure as a primary outcome. We also found that visual analogue scales of disease activity showed significant change when reported by the ophthalmologist, rheumatologist and families. The measures formed three relatively distinct groups. The first group of measures comprised uveitis activity, ocular damage and the ophthalmologists' VAS. The second comprised patient reported outcomes including disruption to school attendance. The third group consisted of the rheumatologists' VAS and the joint score. CONCLUSIONS:We propose distinctive and clinically significant measures of disease activity, severity and damage for JIAU. This effort is the initial step for developing a comprehensive outcome measures for JIAU, which incorporates the perspectives of rheumatologists, ophthalmologists, patients and families.
journal_name
Pediatr Rheumatol Online Jjournal_title
Pediatric rheumatology online journalauthors
Foeldvari I,Klotsche J,Simonini G,Edelsten C,Angeles-Han ST,Bangsgaard R,de Boer J,Brumm G,Torrent RB,Constantin T,DeLibero C,Diaz J,Gerloni VM,Guedes M,Heiligenhaus A,Kotaniemi K,Leinonen S,Minden K,Miranda V,Miserdoi
10.1186/s12969-019-0345-2subject
Has Abstractpub_date
2019-10-01 00:00:00pages
66issue
1issn
1546-0096pii
10.1186/s12969-019-0345-2journal_volume
17pub_type
杂志文章abstract:BACKGROUND:Because pediatric antineutrophil cytoplasmic antibody-associated vasculitis is rare, management generally relies on adult data. We assessed treatment practices, uptake of existing clinical assessment tools, and interest in pediatric treatment protocols among rheumatologists caring for children with granuloma...
journal_title:Pediatric rheumatology online journal
pub_type: 杂志文章,多中心研究
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更新日期:2017-01-31 00:00:00
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doi:10.1186/1546-0096-10-8
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journal_title:Pediatric rheumatology online journal
pub_type: 杂志文章
doi:10.1186/1546-0096-10-16
更新日期:2012-06-15 00:00:00
abstract::Juvenile idiopathic arthritis (JIA) is the most common rheumatic disease of childhood, with JIA-associated uveitis its most common extra-articular manifestation. JIA-associated uveitis is a potentially sight-threatening condition and thus carries a considerable risk of morbidity. The aetiology of the condition is auto...
journal_title:Pediatric rheumatology online journal
pub_type: 杂志文章,评审
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journal_title:Pediatric rheumatology online journal
pub_type: 杂志文章
doi:10.1186/1546-0096-7-21
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journal_title:Pediatric rheumatology online journal
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doi:10.1186/s12969-017-0149-1
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journal_title:Pediatric rheumatology online journal
pub_type: 杂志文章
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journal_title:Pediatric rheumatology online journal
pub_type: 杂志文章
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更新日期:2012-08-20 00:00:00
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journal_title:Pediatric rheumatology online journal
pub_type: 杂志文章
doi:10.1186/s12969-018-0240-2
更新日期:2018-04-10 00:00:00
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journal_title:Pediatric rheumatology online journal
pub_type: 杂志文章
doi:10.1186/s12969-015-0051-7
更新日期:2015-12-01 00:00:00
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journal_title:Pediatric rheumatology online journal
pub_type: 杂志文章
doi:10.1186/1546-0096-9-25
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journal_title:Pediatric rheumatology online journal
pub_type: 杂志文章
doi:10.1186/s12969-018-0270-9
更新日期:2018-09-04 00:00:00
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journal_title:Pediatric rheumatology online journal
pub_type: 杂志文章
doi:10.1186/1546-0096-8-20
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journal_title:Pediatric rheumatology online journal
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pub_type: 杂志文章
doi:10.1186/s12969-017-0176-y
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journal_title:Pediatric rheumatology online journal
pub_type: 杂志文章
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journal_title:Pediatric rheumatology online journal
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journal_title:Pediatric rheumatology online journal
pub_type: 杂志文章
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journal_title:Pediatric rheumatology online journal
pub_type: 杂志文章
doi:10.1186/1546-0096-8-15
更新日期:2010-05-05 00:00:00
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journal_title:Pediatric rheumatology online journal
pub_type: 杂志文章
doi:10.1186/1546-0096-12-17
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journal_title:Pediatric rheumatology online journal
pub_type: 杂志文章
doi:10.1186/s12969-016-0116-2
更新日期:2016-09-20 00:00:00
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pub_type: 杂志文章,多中心研究
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journal_title:Pediatric rheumatology online journal
pub_type: 杂志文章
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journal_title:Pediatric rheumatology online journal
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journal_title:Pediatric rheumatology online journal
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