American College of Rheumatology Provisional Criteria for Clinically Relevant Improvement in Children and Adolescents With Childhood-Onset Systemic Lupus Erythematosus

10.1002/acr.23834ARTHRITIS CARE & RESEARCH715579-59

Tradução E Validação Do Questionário De Avaliação Do Preparo Para A Transição (Traq) Para O Português Brasileiro Em Uma População De Adolescentes E Adultos Jovens Com Doença Reumática Crônica

Objective: To translate and validate a Brazilian-Portuguese version of the Transition Readiness Assessment Questionnaire (TRAQ) in a population of transitional youth with chronic rheumatologic disorders. This questionnaire evaluates the readiness of the patient for making the transition from the pediatric health service to adult care. Methods: We followed the 4-phase methodology for translation and validation of generic questionnaires including translation, back translation, pilot testing and clinical validation of the final instrument. The Cronbach's alpha coefficient was used to assess the overall internal consistency of the final instrument. Results: We enrolled 150 patients with an average age of 17.0 years (SD = 2.2 years, range 14-21years) for the final validation of the instrument. There were 71 patients with juvenile systemic lupus erythematosus (JSLE) (47.3%), 64 with juvenile idiopathic arthritis (JIA) (42.7%) and 15 with juvenile dermatomyositis (JDM) (10%). An initial analysis identified the dimension "Talking with providers" consisting of two questions as not fitting the translated questionnaire due to a very high ceiling effect and had to be excluded. All other translated items favorably contributed to the overall consistency of the final instrument and deleting that dimension did not result in a substantial increase in the Cronbach Alpha. Conclusions: With the exception of one dimension our Brazilian-Portuguese translated version of the TRAQ could be validated in a population of transitional youth with chronic rheumatologic disorders. It is a non-specific disease questionnaire, thus it can be used to evaluate the transition readiness of other Brazilian patients with chronic diseases.Objetivo: Traduzir para o português brasileiro e validar o questionário TRAQ 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, retro tradução, 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: Cento e cinquenta pacientes responderam ao questionário traduzido e adaptado. A média de idade foi de 17,0 anos (DP = 2,2 anos, variação 14-21 anos). Setenta e um pacientes tinham o diagnóstico de lúpus eritematoso sistêmico juvenil (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, obtendo-se um Coeficiente Alfa de Cronbach de 0,776. Conclusões: O questionário TRAQ na sua versão em português brasileiro pode ser validado em uma população de pacientes com doenças reumáticas crônicas em transição, excluindo-se 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.Dados abertos - Sucupira - Teses e dissertações (2017

THE IMPLEMENTATION OF SOVEREIGN IMMUNITY OF WARSHIPS TO UNMANNED UNDERWATER VEHICLES (UUV) UNDER LAW OF THE SEA

Along with the times, there have been advances in marine technology which includes Unmanned Underwater Vehicles (UUV). Some countries have started using UUVs for both commercial and military marine activities since UUVs have several advantages that ordinary ships do not have. However, the development and application of UUVs for marine purposes raises numerous problems since there isn’t clear regulation regarding UUV. Current legal instruments only explain the meaning of ship without classifying the type of ship itself. It raises a problem since it led to different interpretations between countries and the determination of legal rules for UUV. One incident related to UUV technology can be seen from the Bowditch incident where from this incident there are differences in interpretation on the classification of UUV between America and Tiongkok. Other incidents can also be seen from the entry of foreign UUVs into Indonesia waters for research purposes. From several incidents, there are main issues to the classification of UUVs which are connected to warships and their military activities. The classification of UUVs as merchant ships or warships is necessary considering that the rights of immunity owned by warships will affect the legal status of UUVs and their activities. Regulations that are still ambiguous will affect the Coastal State’s actions if there are foreign UUVs entering their sea areas, especially if the UUVs are used for military activities. Therefore, it is necessary to have clear regulations regarding UUVs including their classification and determine marine activities that allowed for the use of UUVs

Challenges in transitioning adolescents and young adults with rheumatologic diseases to adult Care in a Developing Country - the Brazilian experience

Abstract Background Transition guidelines and recommendations for developing countries are limited and best transition practices in young patients with chronic medical conditions have been poorly examined. This study evaluates transition practices from pediatric to adult rheumatology care in Brazil. Methods Practicing pediatric rheumatologists registered in the Brazilian Society of Rheumatology were e-surveyed with SurveyMonkey® using the Chira et al. questionnaire that had been used previously to evaluate transition practices of pediatric rheumatologists from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) in the USA and Canada. The questionnaire was modified to better address specific issues pertaining to the Brazilian health care system. Results Seventy-six of 112 (68%) pediatric rheumatologists responded. Only 13% of the respondents reported that they had a well-established transition program and only 14% were satisfied with their current transition process. Eighty percent did not use any specific tools to assess transition readiness. While 43% of respondents considered 18 as the ideal transition age, only a third effectively transitioned their patients at that age while 48% did later. Major hurdles for a successful transition cited by the respondents included emotional attachment to the patients (95%) insufficient training in transition practice (87%), lack of devoted time for transition preparation and process (80%), lack of assistance by pediatric generalists, (77%), and lack of available adult subspecialists (75%). Sixty-seven percent of respondents stated that their program would need more tools/resources to facilitate transition and 59% believed that the development of specific guidelines would be useful to standardize and help with the transition process. Conclusions Our study demonstrates that the identified challenges pertaining to transition in Brazilian patients are similar to those reported by pediatric rheumatologists in the United States and Canada. However, the current financial economic pressures affecting Brazil’s health care system may force physicians to deprioritize non emergent care such as transition. A comprehensive understanding of transition issues specific to youth in developing countries and educating not only patients but also health care providers about the importance of a seamless transition process will support the development of transition guidelines and ensure better outcomes of pediatric subspecialty patients

Modifiable factors of vitamin D status among a Brazilian osteoporotic population attended a public outpatient clinic Fatores modificáveis do status de vitamina D em uma população brasileira de osteoporóticos assistidos em um ambulatório público

In a cross-sectional study, 363 community-dwelling patients who sought specialized medical care were evaluated between autumn and spring in São Paulo, Brazil. Serum levels of 25(OH)D and parathormone (PTH), biochemical and anthropometric measurements, and bone density scans were obtained. The group was assessed using two questionnaires: one questionnaire covered lifestyle and dietary habits, skin phototype, sun exposure, medical conditions, and levels of vitamin D supplementation (cholecalciferol); the other questionnaire assessed health--related quality-of-life. Logistic regression and a decision tree were used to assess the association between the variables and the adequacy of vitamin D status. Results: The mean age of the overall sample was 67.9 ± 8.6 years, and the mean 25(OH)D concentration was 24.8 ng/mL. The prevalence of inadequate vitamin D status was high (73.3%), although 81.5% of the subjects were receiving cholecalciferol (mean dose of 8,169 IU/week). 25(OH)D was positively correlated with femoral neck bone mineral density and negatively correlated with PTH. In the multivariate analysis, the dose of cholecalciferol, engagement in physical activity and the month of the year (September) were associated with improvement in vitamin D status

American college of rheumatology provisional criteria for clinically relevant improvement in children and adolescents with childhood-onset systemic Lupus erythematosus

To develop a Childhood Lupus Improvement Index (CHILI) as a tool to measure response to therapy in childhood-onset systemic lupus erythematosus (cSLE), with a focus on clinically relevant improvement (CRIcSLE). Methods Pediatric nephrology and rheumatology subspecialists (n = 213) experienced in cSLE management were invited to define CRIcSLE and rate a total of 433 unique patient profiles for the presence/absence of CRIcSLE. Patient profiles included the following cSLE core response variables (CRVs): global assessment of patient well-being (patient-global), physician assessment of cSLE activity (MD-global), disease activity index score (here, we used the Systemic Lupus Erythematosus Disease Activity Index), urine protein-to-creatinine ratio, and Child Health Questionnaire physical summary score. Percentage and absolute changes in these cSLE-CRVs (baseline versus follow-up) were considered in order to develop candidate algorithms and validate their performance (sensitivity, specificity, area under the receiver operating characteristic curve [AUC]; range 0-1). Results During an international consensus conference, unanimous agreement on a definition of CRIcSLE was achieved; cSLE experts (n = 13) concurred (100%) that the preferred CHILI algorithm considers absolute changes in the cSLE-CRVs. After transformation to a range of 0-100, a CHILI score of >= 54 had outstanding accuracy for identifying CRIcSLE (AUC 0.93, sensitivity 81.1%, and specificity 84.2%). CHILI scores also reflect minor, moderate, and major improvement for values exceeding 15, 68, and 92, respectively (all AUC >= 0.92, sensitivity >= 93.1%, and specificity >= 73.4%). Conclusion The CHILI is a new, seemingly highly accurate index for measuring CRI in cSLE over time. This index is useful to categorize the degree of response to therapy in children and adolescents with cSLE.715579590CNPQ - Conselho Nacional de Desenvolvimento Científico e TecnológicoFAPESP – Fundação de Amparo à Pesquisa Do Estado De São Paulo303422/2015-7; 7/2016-9; 304255/2015-7215/03756-