Abstract Objectives Adherence problems have a great impact on auto-immune Rheumatic Diseases (AIRD). The COVID-19 pandemic may have worsened treatment adherence. The aims of this study were to measure treatment adherence to identify an earlier risk of poor adherence and measure families’ satisfaction with the health service during the pandemic. Methods Prospective observational study with 50 parents/children and adolescents with recent AIRD diagnosis. Initially, they answered questions (demographic data, disease) and completed the Pediatric Rheumatology Adherence Questionnaire (PRAQ), after 6 months they completed the Morisky-Green Test (MGT), Brief Medication Questionnaire (BMQ), Compliance Questionnaire for Rheumatology (CQR-19) and Pediatric Quality of Life Inventory Questionnaire 3.0 (PedsQlTM-SSS). The patient's medical records from the previous 12 weeks were reviewed for global and medication adherence data. Results The mean global adherence score was 94.3 ± 10.0, for medication adherence 97.3 ± 9.3, and for PRAQ questionnaire 5.2 ± 1.5. The authors observed agreement between MGT, BMQ, CQR-19, PedsQLTM-SSS scores and medication adherence rate, but not with global adherence rate. There were no associations between demographic characteristics, disease diagnosis, and adherence. No associations between PRAQ scores and values and global/medication adherence rates were observed. No variables were shown to be predictors of good adherence. The mean PedsQLTM-SSS rate was 92.1 ± 6.8. Conclusion The high values of MGT, BMQ, CQR-19 questionnaire scores were in agreement with the medication adherence rate. Despite the pandemic, the global and medication adherence rates were good. It was not possible to demonstrate the PRAQ's predictive power. The authors weren't able to establish an association between families’ satisfaction and treatment adherence rates.

Abstract Objective Advances in medicine have increased the life expectancy of pediatric patients with chronic illnesses, and challenges with the guided transition of adolescents and young adults from pediatric clinics to adult clinics have grown. The aim of this study was to better understand readiness and factors related to this transition process in Brazil. Method In this cross-sectional study of 308 patients aged from 16 to 21 years under follow-up in pediatric specialties, the degree of readiness for transition was assessed using the Transition Readiness Assessment Questionnaire (TRAQ) and its domains. Associations with demographic data, clinical data, socio-economic level, medication adherence, family functionality, and parental satisfaction with health care were evaluated. Results The median TRAQ score was 3.7 (3.2 - 4.2). Better readiness was associated with female patients, socio-economic class A-B, current active employment, higher level of education, not failing any school year, attending medical appointments alone, functional family, and a good knowledge of disease and medications. A low correlation was observed between TRAQ and age. TRAQ presented good internal consistency (alpha-Cronbach 0.86). In the multiple linear regression, TRAQ score showed a significant association with female gender, advanced age, socio-economic class A-B, better knowledge of disease and medications, and independence to attend appointments alone. Conclusion TRAQ instrument can guide healthcare professionals to identify specific areas of approach, in order to support adolescents with chronic disease to set goals for their own personal development and improve their readiness to enter into the adult healthcare system. In this study, some factors were related to better TRAQ scores.

Resumo Os objetivos deste artigo abrangem compreender o impacto da experiência de adoecimento em sobreviventes de câncer infantojuvenil e em seus familiares ao longo dos processos de transição inerentes à vida e, também, explorar o papel que a instituição hospitalar pode desempenhar no decorrer dessas passagens. Uma pesquisa com método psicanalítico foi realizada em um hospital público, filantrópico e considerado referência em oncologia pediátrica. Foram feitas entrevistas em profundidade com 12 adolescentes e suas respectivas mães. A análise das entrevistas embasou-se no referencial psicanalítico de Freud e Lacan, originando duas chaves de leitura: (1) a incidência do Real sobre os sobreviventes e suas mães e os efeitos de indiferenciação no registro Imaginário e de inibição ao sustentar um projeto próprio no futuro; e (2) o efeito de alienação nos sujeitos e em seus corpos produzido por meio da idealização da instituição hospitalar e seu saber biomédico. A partir da análise das entrevistas, foi possível identificar problemáticas relacionadas à modalidade de laço estabelecida entre os entrevistados e instituição hospitalar. Embasados nesta pesquisa, a instituição estudada interessou-se em construir um ambulatório de transição norteado pela ética da psicanálise, visando auxiliar o jovem no desenlace da instituição mediante, principalmente, a sua reinserção social.

Abstract This article aims to understand the impact of the illness experience on child and adolescent cancer survivors and their families during life transitions and to examine the role that the hospital institution can play during these transitions. A study using a psychoanalytic method was conducted in a public, philanthropic hospital that is considered a reference in pediatric oncology. In-depth interviews were conducted with 12 adolescents and their mothers. Analysis of the interviews was based on the psychoanalytic framework of Freud and Lacan and resulted in two reading keys: (1) the effects of the reality on the survivors and their mothers and the effects of undifferentiation in the imaginary register and inhibition to maintain their own project in the future; and (2) the effects of alienation on the subjects and their bodies caused by the idealization of the hospital institution and its biomedical knowledge. Analysis of the interviews revealed problems related to the nature of the bond between the interviewees and the hospital institution. Based on this research, the institution under study was interested in establishing a psychoanalytically oriented transitional clinic to help young people upon discharge from the institution, primarily through their social reintegration.

Resumo Os objetivos deste artigo abrangem compreender o impacto da experiência de adoecimento em sobreviventes de câncer infantojuvenil e em seus familiares ao longo dos processos de transição inerentes à vida e, também, explorar o papel que a instituição hospitalar pode desempenhar no decorrer dessas passagens. Uma pesquisa com método psicanalítico foi realizada em um hospital público, filantrópico e considerado referência em oncologia pediátrica. Foram feitas entrevistas em profundidade com 12 adolescentes e suas respectivas mães. A análise das entrevistas embasou-se no referencial psicanalítico de Freud e Lacan, originando duas chaves de leitura: (1) a incidência do Real sobre os sobreviventes e suas mães e os efeitos de indiferenciação no registro Imaginário e de inibição ao sustentar um projeto próprio no futuro; e (2) o efeito de alienação nos sujeitos e em seus corpos produzido por meio da idealização da instituição hospitalar e seu saber biomédico. A partir da análise das entrevistas, foi possível identificar problemáticas relacionadas à modalidade de laço estabelecida entre os entrevistados e instituição hospitalar. Embasados nesta pesquisa, a instituição estudada interessou-se em construir um ambulatório de transição norteado pela ética da psicanálise, visando auxiliar o jovem no desenlace da instituição mediante, principalmente, a sua reinserção social.

Abstract This article aims to understand the impact of the illness experience on child and adolescent cancer survivors and their families during life transitions and to examine the role that the hospital institution can play during these transitions. A study using a psychoanalytic method was conducted in a public, philanthropic hospital that is considered a reference in pediatric oncology. In-depth interviews were conducted with 12 adolescents and their mothers. Analysis of the interviews was based on the psychoanalytic framework of Freud and Lacan and resulted in two reading keys: (1) the effects of the reality on the survivors and their mothers and the effects of undifferentiation in the imaginary register and inhibition to maintain their own project in the future; and (2) the effects of alienation on the subjects and their bodies caused by the idealization of the hospital institution and its biomedical knowledge. Analysis of the interviews revealed problems related to the nature of the bond between the interviewees and the hospital institution. Based on this research, the institution under study was interested in establishing a psychoanalytically oriented transitional clinic to help young people upon discharge from the institution, primarily through their social reintegration.

RESUMO CONTEXTO: As doenças inflamatórias intestinais (DII), que englobam a doença de Crohn e a colite ulcerativa, são doenças inflamatórias crônicas do trato gastrointestinal que frequentemente se manifestam em adolescentes e adultos jovens (AAJ). As DII são caracterizadas por episódios de doença ativa intercalados com períodos de remissão, e sua atividade se correlaciona inversamente com a qualidade de vida relacionada à saúde (QVRS). OBJETIVO: Este estudo teve como objetivo determinar se AAJ em remissão ou com baixa atividade de DII exibiria QVRS semelhante à de indivíduos saudáveis pareados por idade, e se fatores demográficos da doença poderiam afetar a QVRS usando um instrumento de medidas de desfecho relatadas pelo paciente. MÉTODOS: Este estudo envolveu apenas AAJ com DII, com baixa atividade. Esta pesquisa incluiu cinco clínicas multidisciplinares de dois Hospitais Universitários: Divisões de Gastroenterologia Pediátrica, Gastroenterologia, Coloproctologia, Reumatologia Pediátrica e Adolescentes, São Paulo, Brasil. Um total de 59 AAJ com DII (13-25 anos de idade) e 60 AAJ controle saudáveis (13-25 anos de idade) responderam os questionários Pediatric Quality of Life Inventory 4.0 e 36-Item Short-Form Health Survey e as escalas visuais de dor. Dados demográficos, manifestações extra intestinais, tratamentos e desfechos da doença de Crohn e a colite ulcerativa foram avaliados. RESULTADOS: AAJ com DII e os controles saudáveis foram grupos semelhantes com relação à média de idade (18,63 [13,14-25,80] vs 20,5 [13,68-25,84] anos, P=0,598), quanto à proporção de pacientes do sexo feminino (42% vs 38%, P=0,654), e quanto à porcentagem da classe socioeconômica brasileira média elevada/ média (94% vs 97%, P=0,596). Os escores escola/trabalho foram significativamente mais baixos nos AAJ com DII do que nos controles saudáveis (70 [10-100] vs 75 [5-100], P=0,037). O escore ‘percepção geral de saúde’ foi significativamente mais baixo nos AAJ com DII do que no agrupamento controle saudável (50 [10-80] vs 0 [25-90], P=0,0002). As escalas de avaliação visual de dor foram semelhantes entre os dois grupos (2 [0-10] vs 3 [0-9], P=0,214). Nenhuma associação entre QVRS e parâmetros clínicos e demográficos foi identificada entre os pacientes com DII. CONCLUSÃO: AAJ com baixa atividade das DII relataram baixa QVRS nos domínios da escola/trabalho e percepção geral da saúde, o que destaca um critério de incapacidade nesta vulnerável população.

ABSTRACT BACKGROUND: Inflammatory bowel diseases (IBD), comprising Crohn’s disease and ulcerative colitis, are chronic inflammatory diseases of the gastrointestinal tract that often have their onset among adolescents and young adults (AYA). IBD are characterized by episodes of active disease interspersed with periods of remission, and its activity is inversely correlated with health-related quality of life (HRQL). OBJECTIVE: This study aimed to determine whether AYA in remission or with low IBD activity would exhibit HRQL similar to that of age-matched healthy individuals, and whether demographic and disease factors could affect HRQL using a ‘patient-reported outcome’ instrument. METHODS: This study enrolled only AYA with IBD, with low activity. This research included five multidisciplinary clinics of two academic hospitals: Paediatric Gastroenterology, Gastroenterology, Coloproctology, Paediatric Rheumatology and Adolescent divisions, São Paulo, Brazil. A total of 59 AYA with IBD (age, 13-25 years) and 60 healthy AYA (age, 13-25 years) completed the Pediatric Quality of Life Inventory 4.0 and 36-Item Short-Form Health Survey questionnaires and the visual analogue scale (VAS) for pain. Demographic data, extra-intestinal manifestations, treatment, and outcomes regarding CD and UC were evaluated. RESULTS: AYA with IBD and healthy controls were similar with respect to median ages (18.63 [13.14-25.80] years vs 20.5 [13.68-25.84] years, P=0.598), proportion of female sex (42% vs 38%, P=0.654), and percentage of upper middle/middle Brazilian socioeconomic classes (94% vs 97%, P=0.596). The school/work score was significantly lower in AYA with IBD than in healthy controls (70 [10-100] vs 75 [5-100], P=0.037). The ‘general health-perception’ score was significantly lower in AYA with IBD than in healthy controls (50 [10-80] vs 0 [25-90], P=0.0002). The median VAS, FACES pain rating scale, and total VAS scores were similar between the two groups (2 [0-10] vs 3 [0-9], P=0.214). No association between HRQL and clinical and demographic parameters was identified among IBD patients. CONCLUSION: AYA with low IBD activity reported poor HRQL in school/work and general health perception domains, which highlights a disability criterion in this vulnerable population.

Resumo Objetivo: Avaliar as propriedades psicométricas da versão brasileira dos questionários de qualidade de vida relacionada à saúde de crianças com alergia alimentar e de seus pais. Método: Os processos de tradução e adaptação cultural foram feitos previamente, de acordo com o método proposto pela Organização Mundial da Saúde. Após essa etapa, os questionários foram aplicados a 201 pais de crianças menores de 6 anos com alergia alimentar. A avaliação das propriedades psicométricas incluiu: avaliação da consistência interna, pelo coeficiente alfa de Cronbach; da reprodutibilidade, pelo coeficiente de correlação intraclasse entre teste e reteste; e do constructo, empregou-se o coeficiente de correlação de Spearman, comparando os escores obtidos com os de questionários genéricos que avaliam a qualidade de vida relacionada à saúde. Resultados: As médias dos escores obtidos foram 2,44 e 3,35, para as crianças e seus pais, respectivamente. Os coeficientes alfa de Cronbach foram 0,85 e 0,91, respectivamente, o que demonstrou boa consistência interna dos instrumentos. Os coeficientes de correlação intraclasse entre os testes e os retestes foram 0,87 e 0,84, para crianças e seus pais, respectivamente, demonstraram boa reprodutibilidade para ambos os questionários. A correlação entre os questionários específicos e genéricos foi significante (−0,27 para as crianças; −0,64 para os pais; p < 0,05). Conclusões: Os questionários específicos para avaliar a qualidade de vida relacionada à saúde de crianças com alergia alimentar e de seus pais foram satisfatoriamente validados para uso no Brasil.

Abstract Objective: To evaluate the psychometric properties of the Brazilian version of health-related quality-of-life questionnaires of children with food allergy and their parents. Methods: The translation and cultural adaptation processes were previously performed, according to the method proposed by the World Health Organization. After this stage, the questionnaires were applied to 201 parents of children under 6 years of age with food allergy. The assessment of the psychometric properties included: evaluation of the internal consistency by Cronbach's alpha coefficient; of the reproducibility by the intraclass correlation coefficient between test and retest; and of the construct, using Spearman's correlation coefficient, comparing the obtained scores with those of generic questionnaires that evaluate health-related quality of life. Results: The means of the obtained scores were 2.44 and 3.35, for the children and their parents, respectively. Cronbach's alpha coefficients were 0.85 and 0.91, respectively, which showed good internal consistency of the tools. The intraclass correlation coefficients between test and retest were 0.87 and 0.84 for children and their parents, respectively, showing good reproducibility for both questionnaires. The correlation between the specific and the generic questionnaires was significant (−0.27 for the children, −0.64 for their parents, p < 0.05). Conclusions: The specific questionnaires to evaluate the health-related quality of life of children with food allergy and of their parents were satisfactorily validated to be used in Brazil.

Resumo Objetivos: Avaliar a presença de síndrome das pernas inquietas, movimento periódico das pernas e distúrbios do sono em adolescentes do sexo feminino com dor musculoesquelética idiopática por meio da escala do sono e da polissonografia e comparar esses dados em adolescentes sem histórico de dor. Método: Foram recrutados 26 adolescentes diagnosticados com dor musculoesquelética idiopática acompanhados em um ambulatório de dor e 25 controles saudáveis pareados por idade e escolaridade. Avaliamos os critérios da síndrome das pernas inquietas de acordo com o Grupo Internacional de Estudos de Síndrome das Pernas Inquietas, a Escala de Distúrbios do Sono em Crianças, a polissonografia noturna e os sintomas de ansiedade. Resultados: A idade média dos adolescentes com dor musculoesquelética idiopática foi 13,9 ± 1,6 anos e dos controles foi 14,4 ± 1,4 anos. Um adolescente no grupo de controle (4%) e nove pacientes com dor musculoesquelética idiopática (34,6%) atenderam aos critérios da síndrome das pernas inquietas (p = 0,011). Não observamos diferenças significativas nos escores da Escala de Distúrbios do Sono em Crianças entre os grupos em todos os componentes: distúrbios do início e da manutenção do sono (p = 0,290), distúrbios respiratórios do sono (p = 0,576), distúrbios do despertar (p = 0,162), distúrbios da transição sono-vigília (p = 0,258), sonolência diurna excessiva (p = 0,594) e hiperidrose do sono (p = 0,797). Os parâmetros neurofisiológicos, respiratórios e o movimento periódico das pernas foram semelhantes nos dois grupos. Ansiedade não foi associada à síndrome das pernas inquietas (p = 0,11). Três pacientes com dor musculoesquelética idiopática (11,5%) apresentaram síndrome das pernas inquietas e movimento periódico das pernas simultaneamente, situação ausente no grupo de controle. Conclusão: As adolescentes do sexo feminino com dor musculoesquelética idiopática apresentaram critérios para síndrome das pernas inquietas com mais frequência do que as adolescentes saudáveis. Contudo, não observamos mudanças relevantes nas variáveis do sono objetivas e subjetivas.

Abstract Objectives: To assess the presence of restless legs syndrome, periodic leg movement, and sleep disorders in female adolescents with idiopathic musculoskeletal pain through a sleep scale and polysomnography, and to compare these data in adolescents without pain history. Method: Twenty-six adolescents diagnosed with idiopathic musculoskeletal pain followed in a pain outpatient clinic and 25 healthy controls matched by age and education were recruited. The restless legs syndrome criteria were evaluated according to the International Restless Legs Syndrome Study Group, the Sleep Disturbance Scale for Children was completed, nocturnal polysomnography was performed, and anxiety symptoms were recorded. Results: The mean age of idiopathic musculoskeletal pain adolescents was 13.9 ± 1.6 years; in controls, it was 14.4 ± 1.4 years. One adolescent in the control group (4 %) and nine patients with idiopathic musculoskeletal pain (34.6 %) fulfilled the restless legs syndrome criteria (p = 0.011). The authors did not observe significant differences in Sleep Disturbance Scale for Children scores between the groups in all components: disorders of initiating and maintaining sleep (p = 0.290), sleep breathing disorders (p = 0.576), disorders of arousal (p = 0.162), sleep-wake transition disorders (p = 0.258), disorder of excessive daytime somnolence (p = 0.594), and sleep hyperhidrosis (p = 0.797). The neurophysiological, respiratory, and periodic leg movement parameters were similar in both groups. Having anxiety was not associated with restless legs syndrome (p = 0.11). Three patients with idiopathic musculoskeletal pain (11.5 %) presented restless legs syndrome and periodic leg movement simultaneously, which was absent in the control group. Conclusion: Female adolescents with idiopathic musculoskeletal pain present criteria for RLS more frequently than healthy adolescents. However, this study did not observe relevant changes in objective and subject sleep variables.

RESUMO OBJETIVO Descrever a prevalência de dislipidemias em crianças e adolescentes com doenças reumáticas autoimunes (Drai), em particular artrite idiopática juvenil (AIJ), lúpus eritematoso sistêmico juvenil (Lesj) e dermatomiosite juvenil (DMJ). MÉTODOS Estudo transversal retrospectivo realizado no ambulatório de reumatologia pediátrica. Foram avaliados 186 crianças e adolescentes com idades entre 5 e 19 anos. Foram coletados dos prontuários dados demográficos, clínicos, atividade de doença e perfil lipídico (triglicérides (TG), colesterol total (CT) e frações LDL-c (low density lipoprotein); HDL-c (high density lipoprotein) e VLDL-c (very low density lipoprotein). Foi também calculada a fração não HDL do colesterol (CT-NHDL -c). Para classificação do perfil lipídico, foram adotados os pontos de corte propostos pela American Academy of Pediatrics. RESULTADOS A dislipidemia foi observada em 128 pacientes (68,8%), sendo a mais comum a diminuição do HDL-c em 74 (39,8%). No grupo AIJ houve uma associação entre o subtipo sistêmico com alteração de LDL-c e NHDL-c, mostrando um perfil mais aterogênico neste subtipo (p=0,027 e 0,017, respectivamente). Em relação aos pacientes com Lesj, podemos observar que a dose cumulativa de CTC teve associação com o aumento do LDL-c (p=0,013) e com a diminuição do HDL-c (p=0,022). CONCLUSÃO A dislipidemia é frequente em crianças e adolescentes com Drai, em especial, AIJ, Lesj e DMJ, e a principal alteração no perfil lipídico desses pacientes foi a diminuição do HDL-c.

SUMMARY AIM To describe the prevalence of dyslipidemia in children and adolescents with autoimmune rheumatic diseases (ARDs), particularly juvenile idiopathic arthritis (JIA), juvenile systemic lupus erythematosus (jSLE), and juvenile dermatomyositis (JDM). METHODS Retrospective cross-sectional study conducted in the pediatric rheumatology outpatient clinic. We evaluated 186 children and adolescents between the ages of 5 and 19 years. The medical records were reviewed for the following data: demographic and clinical features, disease activity, and lipid profile (triglycerides (TG), total cholesterol (TC), low density lipoprotein (LDL-C), high density lipoprotein (HDL-C) and very low density lipoprotein (VLDL-C)). In addition, non-HDL cholesterol was calculated as TC minus HDL-C. The cut-off points proposed by the American Academy of Pediatrics were used to classify the lipid profile. RESULTS Dyslipidemia was observed in 128 patients (68.8%), the most common being decreased HDL-C (74 patients, 39.8%). In the JIA group there was an association between the systemic subtype and altered LDL-C and NHDL-C, which demonstrated a more atherogenic profile in this subtype (p=0.027 and p=0.017, respectively). Among patients with jSLE, the cumulative corticosteroid dose was associated with an increase in LDL-C (p=0.013) and with a decrease in HDL-C (p=0.022). CONCLUSION Dyslipidemia is common in children and adolescents with ARDs, especially JIA, jSLE, and JDM, and the main alteration in the lipid profile of these patients was decreased HDL-C.

Abstract Background: Adverse drug reactions (ADRs) are the sixth leading causes of death worldwide; monitoring them is fundamental, especially in patients with disorders like chronic rheumatic diseases (CRDs). The study aimed to describe the ADRs investigating their severity and associated factors and resulting interventions in pediatric patients with CRDs. Methods: A retrospective, descriptive and analytical study was conducted on a cohort of children and adolescents with juvenile idiopathic arthritis (JIA), juvenile systemic lupus erythematosus (JSLE) and juvenile dermatomyositis (JDM). The study evaluated medical records of the patients to determine the causality and the management of ADRs. In order to investigate the risk factors that would increase the risk of ADRs, a logistic regression model was carried out on a group of patients treated with the main used drug. Results: We observed 949 ADRs in 547 patients studied. Methotrexate (MTX) was the most frequently used medication and also the cause of the most ADRs, which occurred in 63.3% of patients, followed by glucocorticoids (GCs). Comparing synthetic disease-modifying anti-rheumatic drugs (sDMARDs) vs biologic disease-modifying antirheumatic drugs (bDMARDs), the ADRs attributed to the former were by far higher than the latter. In general, the severity of ADRs was moderate and manageable. Drug withdrawal occurred in almost a quarter of the cases. In terms of risk factors, most patients who experienced ADRs due to MTX, were 16 years old or younger and received MTX in doses equal or higher than 0.6 mg/kg/week. Patients with JIA and JDM had a lower risk of ADRs than patients with JSLE. In the multiple regression model, the use of GCs for over 6 months led to an increase of 0.5% in the number of ADRs. Conclusions: Although the ADRs highly likely affect a wide range of children and adolescents with CRDs they were considered moderate and manageable cases mostly. However, triggers of ADRs need further investigations.

RESUMO Objetivo: Elaborar, implementar e avaliar um ambiente virtual de aprendizagem online em reumatologia pediátrica, direcionado aos residentes em pediatria, analisando sua efetividade e seus índices de satisfação. Métodos: Foram convidados 92 residentes de pediatria do primeiro e segundo anos de dois centros de referência em pediatria. Os residentes foram divididos, de forma randomizada, em grupo caso (que respondeu ao teste pré-curso, assistiu aos seis módulos virtuais de reumatologia pediátrica e, ao término das aulas virtuais, respondeu ao teste pós-curso e ao questionário de satisfação) e grupo controle (que apenas respondeu ao teste pré-curso e, após quatro semanas, ao teste pós-curso). Resultados: Completaram a participação 47 (51%) residentes. No grupo caso (n=24), o percentual de acertos foi 14% maior no teste pós-curso (p<0,001). Houve um percentual de acertos maior no grupo caso em relação ao grupo controle (n=23) na comparação do resultado do teste pós-curso (p=0,045). Na avaliação da satisfação em relação ao uso do ambiente virtual, os residentes consideraram o site de fácil navegação (91%), adequado como ferramenta de aprendizagem (91%) e com design atrativo (79%). Eles relataram um conhecimento prévio ruim em reumatologia pediátrica (91%) e concordaram que houve um bom aprendizado por meio da metodologia (75%). Conclusões: O ambiente virtual de aprendizado em reumatologia pediátrica mostrou-se uma ferramenta de ensino eficaz e com altos índices de satisfação na sua utilização, fornecendo ao residente em pediatria um conhecimento adequado para avaliação e conduta inicial de pacientes com doenças reumáticas da infância.

ABSTRACT Objective: To develop, implement and evaluate an online virtual learning environment (VLE) on pediatric rheumatology, aimed at pediatric residents, analyzing its effectiveness and satisfaction rates. Methods: A total of 92 first and second year pediatric residents at two pediatric reference centers were invited to participate in the study. Residents were randomized into a case group (that answered the pre-course test, attended the six virtual pediatric rheumatology modules, and then responded to the post-course test and a satisfaction questionnaire) and a control group (that only answered the pre-course test and, after 4 weeks, the post-course test). Results: Forty-seven residents (51%) completed their participation. In the case group (n=24), the mean percentage of correct answers was 14% higher on the post-course test (p<0.001). The number of correct answers was larger in the case group than in the control one (n=23) in the post-course test (p=0.045). In the assessment of satisfaction with VLE use, residents considered the site easy to navigate (91%), suitable as a learning tool (91%), and attractive in design (79%). They reported poor prior knowledge in pediatric rheumatology (91%) and agreed that there was good learning with the methodology (75%). Conclusions: The virtual learning environment in pediatric rheumatology proved to be an effective teaching tool with high satisfaction rates, providing pediatrician residents with adequate knowledge regarding the initial assessment and management of children with rheumatic diseases.

RESUMO Objetivo: Desenvolver um questionário que permitisse a detecção precoce de pacientes em risco de má adesão ao tratamento medicamentoso e não medicamentoso para crianças e adolescentes com doenças reumáticas crônicas. Métodos: O Questionário de Adesão em Reumatologia Pediátrica (QARP) foi aplicado em pacientes recentemente diagnosticados, de um a quatro meses após a confirmação da doença reumática. Seis meses depois, foi avaliada a adesão do paciente ao tratamento medicamentoso e não medicamentoso. Foi realizada uma análise de consistência interna para eliminar questões redundantes no QARP. Resultados: Ao todo, 33 pacientes foram incluídos no estudo-piloto. Seis meses após a aplicação do QARP, observou-se baixa adesão global em sete pacientes (21,2%) e baixa adesão ao tratamento medicamentoso em oito (24,2%) pacientes. Não foi encontrada correlação entre os escores QARP e as porcentagens de adesão, bem como a estratificação para cada indicador, com exceção de uma tendência a uma correlação entre o indicador socioeconômico e a baixa adesão ao tratamento medicamentoso (p=0,08). Um novo questionário QARP com 25 das 46 perguntas originais foi gerado como resultado da análise de confiabilidade. Conclusões: A utilidade deste questionário na prática clínica ainda deve ser avaliada. Devido à importância de uma ferramenta para a detecção precoce de pacientes reumáticos em risco de má adesão ao tratamento, o novo questionário QARP deve ser revisado e aplicado em um estudo maior para que sua validade e confiabilidade sejam mais bem definidas.

ABSTRACT Objective: To develop a questionnaire that allows the early detection of patients at risk for poor adherence to medical and non-medical treatment in children and adolescents with chronic rheumatic diseases. Methods: The Pediatric Rheumatology Adherence Questionnaire (PRAQ) was applied in recently diagnosed patients within a period of one to four months after confirmation of the rheumatic disease. After six months, the patients’ adherence to the medical and non-medical treatment was assessed. An internal consistency analysis was conducted to eliminate redundant questions in the PRAQ. Results: A total of 33 patients were included in the pilot study. Six months after the PRAQ had been applied, poor global adherence was observed in seven (21.2%) patients and poor adherence to medical treatment in eight (24.2%) patients. No correlation was observed between the PRAQ scores and the percentages of adherence, as well as the stratification for each index, except for a tendency to a correlation between socioeconomic index and poor adherence to medical treatment (p=0.08). A new PRAQ questionnaire with 25 of the 46 original questions was generated as a result of the reliability analysis. Conclusions: The usefulness of this questionnaire in clinical practice should be still evaluated. Due to the importance of a tool for the early detection of rheumatic patients at risk of poor adherence to treatment, the new PRAQ questionnaire should be reviewed and applied in a larger study to better define its validity and reliability.

Resumo Objetivo: Traduzir para o português brasileiro e validar o Questionário de Avaliação do Preparo para a Transição em uma população de adolescentes e adultos jovens com doenças reumáticas crônicas. Este questionário avalia o preparo do paciente para realizar a transição do serviço de saúde pediátrico para a assistência ao adulto. Métodos: Seguimos a metodologia de quatro etapas para a tradução e validação de questionários genéricos que inclui tradução, retrotradução, teste piloto e validação clínica do instrumento final. Utilizamos Análise Fatorial Confirmatória e Coeficiente Alfa de Cronbach para testar a validade do instrumento e sua consistência interna. Resultados: Responderam ao questionário traduzido e adaptado 150 pacientes. A média de idade foi de 17,0 anos (DP = 2,2 anos, variação 14-21 anos). Tinham o diagnóstico de lúpus eritematoso sistêmico juvenil 71 pacientes (47,3%), 64 (42,7%) artrite idiopática juvenil e 15 (10%) dermatomiosite juvenil. Durante a análise fatorial confirmatória, a dimensão "Falando com a Equipe Médica" contendo duas questões teve que ser removida devido à presença de expressivo efeito teto. Todas as outras questões restantes contribuíram favoravelmente para aumentar a consistência interna do questionário, obteve-se um Coeficiente Alfa de Cronbach de 0,776. Conclusões: O Questionário de Avaliação do Preparo para a Transição na sua versão em português brasileiro pode ser validado em uma população de pacientes com doenças reumáticas crônicas em transição, com a exclusão de uma dimensão do questionário original. Por ser um questionário não específico para doenças reumáticas, poderá ser utilizado para avaliar o preparo para a transição de outros pacientes brasileiros com doenças crônicas.

Abstract Objective: To translate and validate the Brazilian Portuguese version of the Transition Readiness Assessment Questionnaire in a population of adolescents and young adults with chronic rheumatologic disorders. This questionnaire evaluates the patient's readiness for making the transition from the pediatric health service to adult care. Methods: The four-phase methodology for the translation and validation of generic questionnaires was followed, including translation, back-translation, pilot testing and clinical validation of the final tool. The confirmatory factor analysis was used for clinical validation and the Cronbach's alpha coefficient was used to assess the overall internal consistency of the final tool. Results: A total of 150 patients with a mean age of 17.0 years (SD = 2.2 years, range 14-21 years) were enrolled for the final tool validation. Of those, 71 patients had juvenile systemic lupus erythematosus (47.3%), 64 had juvenile idiopathic arthritis (42.7%), and 15 had juvenile dermatomyositis (10%). During the confirmatory factor analysis, the dimension "Talking with providers" consisting of two questions, was considered as not fitting the translated questionnaire due to a very high ceiling effect and was therefore excluded. All other translated items favorably contributed to the overall consistency of the final tool; removing that dimension did not result in a substantial increase in Cronbach's alpha, which was 0.776. Conclusions: The Brazilian Portuguese version of the Transition Readiness Assessment Questionnaire was validated in a population of transitional patients with chronic rheumatologic disorders, after one dimension from the original questionnaire was excluded. It is a non-specific disease questionnaire; thus, it can be used to evaluate the transition readiness of Brazilian patients with other chronic diseases.

RESUMO Objetivo: Mensurar e comparar a dor musculoesquelética em pacientes com fibromialgia juvenil (FMJ) e em pacientes com artrite idiopática juvenil poliarticular (AIJ); e avaliar e comparar a percepção e o enfrentamento da dor. Métodos: Foram avaliados, em estudo transversal, 150 crianças e adolescentes (e seus respectivos pais), divididos em três grupos: FMJ, AIJ e controles saudáveis. A mensuração e o enfrentamento da dor foram realizados por meio de instrumentos específicos. Para a avaliação da percepção da dor, desenvolveram-se três vinhetas com simulação de situações que pudessem gerar dor: aplicação de injeção, queda de bicicleta e isolamento social. Os pais e os pacientes responderam individualmente quanto à percepção da dor em cada situação. Resultados: As maiores notas de dor, os menores escores de enfrentamento da dor, as maiores notas para a percepção da dor nas vinhetas e os piores índices de qualidade de vida relacionada à saúde foram observados nos pacientes com FMJ, quando comparados aos pacientes com AIJ e aos controles. O mesmo padrão foi observado com os respectivos pais. Conclusões: Pacientes com AIJ e FMJ se comportam diferentemente em relação à percepção da dor e ao desenvolvimento de técnicas para o enfrentamento da dor. A dor deve ser avaliada sob diferentes perspectivas para um planejamento mais individualizado e efetivo do tratamento desses pacientes.

ABSTRACT Objective: To measure and compare musculoskeletal pain in patients with juvenile fibromyalgia (JFM) and polyarticular juvenile idiopathic arthritis (JIA), and to evaluate and compare pain perception and pain coping mechanisms in these patients. Methods: In this cross sectional study, we evaluated 150 children and adolescents, and their respective parents, from 3 different groups: JFM, polyarticular JIA, and healthy controls. Pain intensity and pain coping mechanisms were measured using specific questionnaires. Pain perception was evaluated according to three illustrations simulating situations that might cause pain: a shot, a bicycle fall, and social isolation. The patients’ parents also filled out the questionnaires and provided a pain score that matched their child’s perception of pain for each illustration. Results: The highest pain scores, the lowest pain coping strategy scores, the highest pain perception scores for all three illustrations, and the worse health related to quality of life indicators were observed in the JFM group, when compared to the JIA and control groups. The same pattern was observed with their parents. Conclusions: Patients with JIA and JFM behave differently in relation to pain perception and the development pain coping mechanisms. Pain should be evaluated from different perspectives for an individualized and efficient treatment of patients.

Abstract Background: Juvenile idiopathic arthritis (JIA) is a chronic inflammatory disease that affects children and adolescents. Its prevalence varies greatly from one study to another according to the population and methodology. Some tools may be helpful in screening for suspected cases. The aim of this study is determine the prevalence of JIA in children and adolescent students in the city of São Paulo, Brazil. Methods: This cross-sectional study was conducted from March 2016 to November 2017. It was based on a populational study envolving school children and adolescents from São Paulo, the largest city of Brazil. We randomly selected students under 16 years old from private schools with more than 1000 students who were evaluated through a specific questionnaire for screening suspected cases of chronic arthropathy (Early Diagnosis of Chronic Arthritis - 12 items - EDA-12) and subsequent anamnesis and rheumatologic physical examination for diagnostic confirmation. Results: We contacted all 79 schools in the universe, of which 12(15, 18%) agreed to participate in the study. A total of 21,119 questionnaires were handed out to the parents. We obtained a response of 5,710 (27%). In 108 cases the EDA-12 score was considered positive (≥ 5). We examined all these 108 suspicious” children. In 10 cases, the rheumatologic evaluation confirmed the diagnosis of arthritis, since the subjects presented a history and physical examination compatible with JIA. The prevalence of JIA in children and adolescents was 0.196% (95% CI = 0.1040.371%). Conclusion: In this first Brazilian population study to evaluate the prevalence of JIA, we observed that the disease is relatively prevalent in our country (196 / 100.000 children), which is similar to that observed in other studies involving children from urban centers.

Abstract Introduction: Musculoskeletal pain is a constant complaint in pediatric practice. The pain may be related to a number of organic diseases and / or be part of the amplified musculoskeletal pain syndromes. Idiopathic musculoskeletal pain (IMSP) is defined as the presence of intermittent pain in three or more body regions for at least three months, excluding organic diseases that could explain the symptoms. Objective: To study the gait of children and adolescents with IMSP by dynamic baropodometry. Methodology: Thirty-two patients with IMSP and 32 healthy controls, matched by age, sex, social class, and body mass index (BMI) were enrolled. All were evaluated for pain intensity through the visual analogue scale (VAS) and gait evaluation using dynamic baropodometry. Results: The mean age of the IMSP group was 13.6 years (SD = 2.1, range 9.8-16.9) and of the control group was 13.5 years (SD = 2.0, range 9.6-16.5). The mean pain scale was 5.4 cm in the IMSP group and 0 cm in the control group (p < 0.001). In gait, the mean right foot velocity of the IMSP group was significantly lower (p = 0.034), the time of the step of the IMSP group was significantly higher (p = 0.003) and the pace of the IMSP group was significantly lower (p = 0.001). Conclusion: In our study we observed differences between the gait of children with IMSP and healthy controls according to the dynamic baropodometry. This finding indicates the need for individualized attention to the gait of children with musculoskeletal pain.