Performance of Birmingham Vasculitis Activity Score and disease extent index in childhood vasculitides.

OBJECTIVES: To evaluate the performance of the Birmingham Vasculitis Activity Score (BVAS) v3 and the Disease Extent Index (DEI) for the assessment of disease activity in 4 primary childhood (c-) systemic vasculitides. METHODS: Patients fulfilling the EULAR/PRINTO/PRES (Ankara) c-vasculitis classification criteria for Henoch-Schönlein purpura (HSP), childhood (c) polyarteritis nodosa (c-PAN), c-Wegener's granulomatosis (c-WG) and c-Takayasu arteritis (c-TA) with disease duration at the time of diagnosis ≤3 months were extracted from the PRINTO database. The performance of the BVAS and DEI were examined by assessing convergent validity, the pattern of disease involvement, and responsiveness. We also evaluated alternative unweighted scoring methods for both tools. RESULTS: The analysis set included 796 patients with 669 HSP, 80 c-PAN, 25 c-WG and 22 c-TA. The median age at diagnosis was 6.9 years (6.6-12) and median delay in making the diagnosis from the onset of signs/symptoms was 0.01 (0.003-0.027) years. A strong correlation was found between the BVAS and DEI (rs=0.78) while correlation with the physician global assessment was moderate (rs=0.48) with BVAS and poor with DEI (rs=0.25). Both the BVAS and DEI sub-scores and total scores were able to descrive the disease involvement in the 4 childhood vasculitides. Responsiveness was large (>1.5) for both tools. The performance characteristics of the BVAS and DEI with the unweighted methods were comparable. CONCLUSIONS: This study demonstrates that both the BVAS and DEI are valid tools for the assessment of the level of disease activity in a large cohort of childhood acute and chronic vasculitides.

Development and initial validation of composite parent- and child-centered disease assessment indices for juvenile idiopathic arthritis.

OBJECTIVE: To develop and validate a parent-centered and a child-centered composite disease assessment index for juvenile idiopathic arthritis (JIA): the Juvenile Arthritis Parent Assessment Index (JAPAI) and the Juvenile Arthritis Child Assessment Index (JACAI), respectively. METHODS: The JAPAI and the JACAI include 4 measures: parent/child rating of overall well-being, pain, physical function, and health-related quality of life (HRQOL). Validation analyses were conducted on nearly 5,000 patients and included assessment of construct validity, discriminant validity, responsiveness to change, and reliability. Besides the 4-item version, a 3-item version of both indices, which did not include HRQOL, was tested. RESULTS: The JAPAI and the JACAI demonstrated good construct validity, yielding high correlations with the Juvenile Arthritis Disease Activity Score and moderate correlations with physician global rating and joint counts. Correlations obtained for the JAPAI and the JACAI and for the 4-item and the 3-item versions were comparable. Factorial analysis by principal component analysis showed that both indices are monodimensional. Both the JAPAI and JACAI discriminated well between different disease states and courses and between different levels of American College of Rheumatology Pediatric criteria in a clinical trial, and revealed fair responsiveness to clinical change. Internal consistency was satisfactory, with a Cronbach's alpha of >0.80 in all but 1 of the patient samples tested. CONCLUSION: The JAPAI and the JACAI were found to be valid instruments for assessment of disease status in JIA and suitable surrogates of physicians' evaluations. Both indices are potentially applicable in clinical practice, observational studies, and therapeutic trials.

Informática na educação: perspectivas de inclusão / Computer Literacy in Education - The Perspectives of Inclusion

O presente artigo tem como objetivo analisar as perspectivas de mudanças na abordagem educacional de uma escola de Educação Especial a partir de um projeto de Informática na Educação. Para tanto faz-se um resgate cronológico das etapas de implantação do projeto de informática e as modificações que ocorreram na abordagem educacional. Como marco inicial encontramos as propostas de formação de professores e a informática como recurso possível para construção de conhecimento de pessoas com necessidades especiais decorrentes de deficiência física. As mudanças ocorridas ao longo desta trajetória são explicitadas a analisadas por meio dos projetos de trabalho, postura de alunos e professores, reflexões sobre as práticas emergentes, reformulações na gestão, bem como análise de atitudes rumo à construção de autonomia dos alunos com necessidades educativas especiais, enquanto pessoas conscientes de suas limitações, porém com possibilidades para caminhar rumo ao desenvolvimento de competências. Desta forma foi desenvolvido um processo de formação continuada para que o professor encontrasse respostas a indagações surgidas neste caminho e que mostraram tão presentes em seu cotidiano. O eixo central que sustentou as diferentes indagações permeou as questões curriculares e a formação de professores. Os resultados desta investigação evidenciaram quanto o recurso da informática potencializa mudanças na educação com vistas a inclusão, porém nos apontou a importância dos demais elementos do processo educacional para construir uma pedagogia diferenciada e uma nova proposta educacional, que valorize todos os protagonistas do processo apresentando uma visão de escola democrática, que privilegie: formação do cidadão e construção de competências, possibilitando assim que as pessoas com necessidades educativas especiais possa ser efetivamente incluída na sociedade do conhecimento.