Cross-cultural adaptation and validation of the universal Portuguese-version of the Pediatric Functional Assessment of Chronic Illness Therapy - Fatigue (pedsFACIT-F) / Adaptação transcultural e validação da versão portuguesa universal da Escala Avaliação Funcional Pediátrica de Terapia de Doença Crônica - Fadiga (pedsFACIT-F)

Abstract Objective: To cross-culturally adapt and validate the universal Portuguese version of the Pediatric Functional Assessment of Chronic Illness Therapy - Fatigue (pedsFACIT-F). Method: The universal Portuguese version of the pedsFACIT-F was cross-culturally adapted and validated in 323 children and adolescents aged 8-18 years, 173 healthy individuals, and 150 with chronic diseases (cancer, juvenile idiopathic arthritis, and diabetes). Reliability (internal consistency and test-retest reliability) was assessed. Item response theory model assumptions were evaluated using confirmatory and exploratory factor analyses. Items were calibrated using a graded response model. Differential item functioning was assessed regarding age, gender, and clinical condition (healthy vs. chronic diseases). Results: No major cultural adaptations were needed. Internal consistency (Cronbach's alpha = 0.84) and test-retest reliability (intraclass correlation coefficient = 0.92) were good. CFA (CFI = 0.92, TLI = 0.90, RMSEA = 0.097) and CFE analysis confirmed sufficient unidimensionality. The data also fit the GRM and demonstrated good coverage of the fatigue construct (threshold parameters range: -1.42 to 4.56). No items demonstrated significant differential item functioning. Conclusion: The universal Portuguese version of the pedsFACIT-F provides a reliable, precise, and valid measure after being assessed by robust psychometric properties. Stability of the measurement properties of the pedsFACIT-F scale allows its use to assess fatigue in clinical research in Portuguese-speaking children and adolescents.

Resumo Objetivo: Adaptar transculturalmente e validar a versão portuguesa universal da escala Avaliação Funcional Pediátrica de Terapia de Doença Crônica - Fadiga (pedsFACIT-F). Método: A versão traduzida para o português universal e adaptada transculturalmente da escala pedsFACIT-F foi validada em 323 crianças (entre 8 e 18 anos), 173 saudáveis e 150 com doenças crônicas (câncer, artrite idiopática juvenil e diabetes). A confiabilidade foi avaliada pela consistência interna e confiabilidade teste-reteste. Os pressupostos do modelo da teoria da resposta ao item foram avaliados por meio da análise fatorial confirmatória e exploratória. Os itens foram calibrados segundo modelo de resposta gradual. O funcionamento diferencial do item foi examinado com respeito à idade, ao gênero e à condição de saúde (saudáveis versus doenças crônicas). Resultados: A adaptação cultural não apresentou dificuldades substantivas. A confiabilidade da consistência interna (alfa-Cronbach = 0,84) e do teste-reteste (correlação intraclasse = 0,92) foram adequadas. As análises da AFC (CFI = 0,92, TLI = 0,90, RMSEA = 0,097) e AFE confirmaram suficiente unidimensionalidade. O estudo de calibração demostrou bom ajuste do MRG e boa cobertura do construto fadiga (variação dos limiares das categorias de resposta: -1,42 a 4,56). Não foi verificada presença de funcionamento diferencial do item significante. Conclusão: A versão portuguesa universal da escala pedsFACIT-F é uma medida confiável, precisa e válida, verificada após análises de propriedades psicométricas robustas. A estabilidade das propriedades de medida da escala permite seu uso para avaliação de fadiga em estudos clínicos com crianças e adolescentes em países lusófonos.

Validation and calibration of the patient-reported outcomes measurement information system: Pediatric PROMIS® Emotional Distress domain item banks, Portuguese version (Brazil/Portugal).

OBJECTIVE: This paper goal was to validate the Portuguese version (Brazil/Portugal) of the Anger, Anxiety, and Depressive Symptoms item banks of the Pediatric PROMIS® Emotional Distress domain (version 1.0) for the Brazilian and Portuguese pediatric population. METHOD: The total of 1216 participants answered a self-applied version of the Portuguese Anger, Anxiety, and Depressive Symptoms item banks. Reliability was assessed through internal consistency, test-retest reliability, and total information curve (TIC). Confirmatory Factor Analysis (CFA) with a bifactor model was used to confirm construct validity and IRT assumptions. Item calibration was performed according to Graded Response Model (GRM). Differential Item Functioning (DIF) was analyzed according the participants' age, gender, health condition (healthy versus chronic disease), and language. RESULTS: Internal consistency reliability (Cronbach's alpha coefficient = 0.84) and test-retest reliability (intraclass correlation = 0.93) were accurate. Unidimensionality, Local Independency, and construct validity were verified by CFA (CFI = 0.93; TLI = 0.93; RMSEA = 0.05; χ2 = 3052.4 with DIF = 557 and P value = 0.595). GRM was adjusted, and Emotional Distress had a satisfactory coverage. DIF was not significant. CONCLUSION: The results obtained indicate the adequacy of the psychometric properties of the Portuguese version (Brazil/Portugal) of the Anger, Anxiety, and Depressive Symptoms item banks of the Pediatric PROMIS® Emotional Distress domain.

Cross-cultural adaptation and validation of the universal Portuguese-version of the Pediatric Functional Assessment of Chronic Illness Therapy - Fatigue (pedsFACIT-F).

OBJECTIVE: To cross-culturally adapt and validate the universal Portuguese version of the Pediatric Functional Assessment of Chronic Illness Therapy - Fatigue (pedsFACIT-F). METHOD: The universal Portuguese version of the pedsFACIT-F was cross-culturally adapted and validated in 323 children and adolescents aged 8-18 years, 173 healthy individuals, and 150 with chronic diseases (cancer, juvenile idiopathic arthritis, and diabetes). Reliability (internal consistency and test-retest reliability) was assessed. Item response theory model assumptions were evaluated using confirmatory and exploratory factor analyses. Items were calibrated using a graded response model. Differential item functioning was assessed regarding age, gender, and clinical condition (healthy vs. chronic diseases). RESULTS: No major cultural adaptations were needed. Internal consistency (Cronbach's alpha=0.84) and test-retest reliability (intraclass correlation coefficient=0.92) were good. CFA (CFI=0.92, TLI=0.90, RMSEA=0.097) and CFE analysis confirmed sufficient unidimensionality. The data also fit the GRM and demonstrated good coverage of the fatigue construct (threshold parameters range: -1.42 to 4.56). No items demonstrated significant differential item functioning. CONCLUSION: The universal Portuguese version of the pedsFACIT-F provides a reliable, precise, and valid measure after being assessed by robust psychometric properties. Stability of the measurement properties of the pedsFACIT-F scale allows its use to assess fatigue in clinical research in Portuguese-speaking children and adolescents.

Translation, Cross-Cultural Adaptation, and Validation of the Parkinson's Disease Quality of Life Questionnaire (PDQL), the "PDQL-BR", into Brazilian Portuguese.

Translate, culturally adapt, and validate the "Parkinson's Disease Quality of Life" (PDQL) BR, into Brazilian Portuguese. Fifty-two patients answered the PDQL-BR. Twenty-one patients answered the PDQL-BR again 14 days later. The UPDRS and HY scale was applied. Validation was evaluated using psychometric properties, checking the quality of the data, reliability, and validity. Quality of the data was evaluated based on occurrence of ceiling and floor effects. Reliability was evaluated based on: internal consistency of an item, homogeneity, and reproducibility. Validation was checked through the evaluation of convergent and discriminatory validation. There was no ceiling and floor effect. When evaluating reliability, items 20, 30, and 37 showed correlation of 0.34, 0.26, and 0.37, respectively, to your scale; the other items was higher than 0.4. The alpha Cronbach coefficient was higher than 0.7 for most domains. There was good reproducibility. There were no meaningful changes in the PDQL-BR translation and cross-cultural adaptation.

[Macrophage activation syndrome associated with systemic juvenile idiopathic arthritis]. / Síndrome de ativação macrofágica associada com artrite idiopática juvenil sistêmica.

OBJECTIVE: To describe the characteristics of macrophage activation syndrome associated with juvenile idiopathic arthritis. DESCRIPTION: This is a retrospective study involving 462 patients with juvenile idiopathic arthritis. Seven (1.5%) of those patients suffered from systemic onset juvenile idiopathic arthritis and developed macrophage activation syndrome. The median age of the juvenile idiopathic arthritis onset was 3 years and 10 months and the median duration of juvenile idiopathic arthritis before macrophage activation syndrome was 8 years and 4 months. All of them presented with fever, jaundice, hepatosplenomegaly, bleeding, pancytopenia, abnormal liver function tests and abnormal coagulation profile. Three cases presented associated infections and one patient developed macrophage activation syndrome two weeks after the administration of sulfasalazine. Three patients died and the macrophage hemophagocytosis was present in five. The treatment of macrophage activation syndrome included pulse therapy with methylprednisolone in all of them, cyclosporine A in three, plasma exchange in two and intravenous immunoglobulin in two. COMMENTS: Macrophage activation syndrome is a complication of the systemic onset juvenile idiopathic arthritis with a high morbidity and mortality rate.

Síndrome de ativação macrofágica associada com artrite idiopática juvenil sistêmica / Macrophage activation syndrome associated with systemic juvenile idiopathic arthritis

OBJETIVO: Descrever as características da síndrome de ativação macrofágica associada a artrite idiopática juvenil. DESCRIÇÃO DOS CASOS: Foram analisados retrospectivamente os prontuários de 462 pacientes com artrite idiopática juvenil. Destes, sete (1,5 por cento) pacientes desenvolveram síndrome de ativação macrofágica; todos tinham a forma sistêmica da doença. A mediana de idade de início da artrite idiopática juvenil foi de 3 anos e 10 meses, e a mediana do tempo de duração da artrite idiopática juvenil antes da síndrome de ativação macrofágica foi de 8 anos e 4 meses. Todos os pacientes apresentaram febre, icterícia, hepatoesplenomegalia, sangramentos, pancitopenia e elevação das enzimas hepáticas e dos tempos de coagulação e bilirrubina direta. Três casos apresentaram infecções associadas e um caso desenvolveu a síndrome de ativação macrofágica 2 semanas após a introdução de sulfasalazina. Três pacientes morreram. Proliferação macrofágica e hemofagocitose foram evidenciadas em cinco. A terapêutica da síndrome de ativação macrofágica incluiu pulsoterapia com metilprednisolona em todos, ciclosporina em três, plasmaférese em dois e gamaglobulina endovenosa em dois. COMENTARIOS: A síndrome de ativação macrofágica é uma complicação da artrite idiopática juvenil sistêmica com alta morbidade e mortalidade.

Artrite reumatoide juvenil: uma experiência de atendimento ambulatorial pelo Serviço Social / Juvenile rheumatoid arthritis: an experience of ambulatory care by the social service

Sessenta crianças portadoras de artrite reumatóide juvenil e seus familiares foram estudados tendo em vista os problemas econômicos, afetivos e os distúrbios na dinâmica familiar induzidos ou exacerbados pela doença. A artrite reumatóide juvenil representa para a criança doente um importante obstáculo à vida normal, determinando alteraçöes de comportamento, por vezes severas. Para os pais e familiares o ônus financeiro e afetivo costumam ser pesados, podendo ocasionar distúrbios na dinâmica familiar. Fatores de ordem emocional talvez possam interferir no curso da doença ou mesmo desencadeá-la