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Abstract Objective: to assess mental health issues in pediatric nurses during coronavirus pandemic in 2019. Method: cross-sectional study was conducted with pediatric nurses at the Instituto da Criança e do Adolescente based on online self-rated survey about clinical practice and mental health impact during COVID-19 pandemic. Validated self-reported scales for anxiety, depression and burnout were used for assessing these professionals. Results: 107/298 (36%) nurses answered, 90% were female, median age was 41(23-64) years, 68% worked with adolescents, 66% in frontline. Burnout, anxiety and moderate/severe depression occurred in 65%, 72% and 74%, respectively. Lack of standardized treatment protocol for nurses (27%vs.10%, p=0.049), moderate/severe depression (74% vs. 16%, p=0.002) and burnout (82% vs. 58%, p=0.01) were significantly higher in pediatric nurses with anxiety compared to those without. Pediatric nurses that worked with adolescents compared to those that did not showed higher frequency of burnout in the former group (77% vs. 32%, p=0.0001). Multivariable analysis revealed that adequate quarantine adherence increased the presence of anxiety in 4.6 times [OR4.6(CI 1.1-20.2), p=0.04]. Conclusion: most pediatric nurses who had worked in the frontline of COVID-19 were under precarious conditions, working with reduced team, and with an expressive changes in their monthly income. Current anxiety was a relevant issue, burnout was also an important mental condition for these professionals, reinforcing culture of good teamwork, collaboration practices and psychological/psychiatric approach. Resumen Objetivo: evaluar los problemas de salud mental en enfermeros pediátricos durante la pandemia del coronavirus 2019. Método: estudio transversal realizado con enfermeros pediátricos del Instituto da Criança e do Adolescente mediante una encuesta de autoevaluación en línea sobre la práctica clínica y el impacto en la salud mental durante la pandemia de COVID-19. Se evaluaron escalas de autoevaluación validadas para ansiedad, depresión y burnout. Resultados: respondieron 107/298 (36%) de los enfermeros, de los cuales 90% eran del sexo femenino, la mediana de edad actual fue de 41 (23-64) años, 68% trabajaban con adolescentes, 66% trabajaban en primera línea. Burnout, ansiedad y depresión moderada/grave ocurrieron en 65%, 72% y 74% de los enfermeros, respectivamente. Falta de protocolo de tratamiento estandarizado en las enfermerías (27% vs. 10%, p=0,049), depresión moderada/grave (74% vs. 16%, p=0,002) y burnout (82% vs. 58%, p=0,01) fueron significativamente mayores en enfermeros pediátricos con ansiedad en comparación con enfermeros sin esta condición. Los enfermeros pediátricos que trabajaban con adolescentes presentaron mayor frecuencia de burnout en comparación con los que no trabajaban con adolescentes (77% vs. 32%, p=0,0001). El análisis multivariado reveló que el adecuado cumplimiento de la cuarentena aumentó 4,6 veces la presencia de ansiedad [OR 4.6(IC 1,1-20,2), p=0,04]. Conclusión: La mayoría de los enfermeros pediátricos trabajaban en la primera línea de la COVID-19, en condiciones precarias, trabajando con un equipo reducido y enfrentando importantes pérdidas de ingresos. La ansiedad actual fue un tema relevante y el burnout también fue una condición mental importante para estos profesionales, reforzando la cultura del buen trabajo en equipo, las prácticas colaborativas y la atención psicológica/psiquiátrica. Resumo Objetivo: avaliar problemas de saúde mental em enfermeiros pediátricos durante a pandemia causada pelo coronavírus 2019. Método: estudo transversal realizado com enfermeiros pediátricos do Instituto da Criança e do Adolescente, por meio de uma pesquisa online de autoavaliação sobre prática clínica e impacto na saúde mental, durante a pandemia de COVID-19. Foram avaliadas escalas de autoavaliação validadas para ansiedade, depressão e burnout. Resultados: 107/298(36%) enfermeiros responderam, dos quais 90% eram do sexo feminino, a mediana de idade atual era 41(23-64) anos, 68% trabalhavam com adolescentes, 66% trabalhavam na linha de frente. Burnout, ansiedade e depressão moderada/grave ocorreram em 65%, 72% e 74% dos enfermeiros, respectivamente. Falta de protocolo de tratamento padronizado nas enfermarias (27% vs. 10%, p=0,049), depressão moderada/grave (74% vs. 16%, p=0,002) e burnout (82% vs. 58%, p=0,01) foram significativamente maiores em enfermeiros pediátricos com ansiedade, em comparação com enfermeiros sem essa condição. Os enfermeiros pediátricos que trabalhavam com adolescentes apresentaram maior frequência de burnout, quando comparados aos que não trabalhavam com esse grupo (77% vs. 32%, p=0,0001). A análise multivariada revelou que o cumprimento adequado da quarentena aumentou a presença de ansiedade em 4,6 vezes [OR 4.6(IC 1,1-20,2), p=0,04]. Conclusão: a maioria dos enfermeiros pediátricos atuava na linha de frente da COVID-19, em condições precárias, trabalhando com equipe reduzida e enfrentando perdas expressivas de renda. A ansiedade atual foi um tema relevante e o burnout também foi uma condição mental importante para esses profissionais, reforçando a cultura do bom trabalho em equipe, das práticas de colaboração e do cuidado psicológico/psiquiátrico.

Resumen Objetivo: evaluar los problemas de salud mental en enfermeros pediátricos durante la pandemia del coronavirus 2019. Método: estudio transversal realizado con enfermeros pediátricos del Instituto da Criança e do Adolescente mediante una encuesta de autoevaluación en línea sobre la práctica clínica y el impacto en la salud mental durante la pandemia de COVID-19. Se evaluaron escalas de autoevaluación validadas para ansiedad, depresión y burnout. Resultados: respondieron 107/298 (36%) de los enfermeros, de los cuales 90% eran del sexo femenino, la mediana de edad actual fue de 41 (23-64) años, 68% trabajaban con adolescentes, 66% trabajaban en primera línea. Burnout, ansiedad y depresión moderada/grave ocurrieron en 65%, 72% y 74% de los enfermeros, respectivamente. Falta de protocolo de tratamiento estandarizado en las enfermerías (27% vs. 10%, p=0,049), depresión moderada/grave (74% vs. 16%, p=0,002) y burnout (82% vs. 58%, p=0,01) fueron significativamente mayores en enfermeros pediátricos con ansiedad en comparación con enfermeros sin esta condición. Los enfermeros pediátricos que trabajaban con adolescentes presentaron mayor frecuencia de burnout en comparación con los que no trabajaban con adolescentes (77% vs. 32%, p=0,0001). El análisis multivariado reveló que el adecuado cumplimiento de la cuarentena aumentó 4,6 veces la presencia de ansiedad [OR 4.6(IC 1,1-20,2), p=0,04]. Conclusión: La mayoría de los enfermeros pediátricos trabajaban en la primera línea de la COVID-19, en condiciones precarias, trabajando con un equipo reducido y enfrentando importantes pérdidas de ingresos. La ansiedad actual fue un tema relevante y el burnout también fue una condición mental importante para estos profesionales, reforzando la cultura del buen trabajo en equipo, las prácticas colaborativas y la atención psicológica/psiquiátrica. Resumo Objetivo: avaliar problemas de saúde mental em enfermeiros pediátricos durante a pandemia causada pelo coronavírus 2019. Método: estudo transversal realizado com enfermeiros pediátricos do Instituto da Criança e do Adolescente, por meio de uma pesquisa online de autoavaliação sobre prática clínica e impacto na saúde mental, durante a pandemia de COVID-19. Foram avaliadas escalas de autoavaliação validadas para ansiedade, depressão e burnout. Resultados: 107/298(36%) enfermeiros responderam, dos quais 90% eram do sexo feminino, a mediana de idade atual era 41(23-64) anos, 68% trabalhavam com adolescentes, 66% trabalhavam na linha de frente. Burnout, ansiedade e depressão moderada/grave ocorreram em 65%, 72% e 74% dos enfermeiros, respectivamente. Falta de protocolo de tratamento padronizado nas enfermarias (27% vs. 10%, p=0,049), depressão moderada/grave (74% vs. 16%, p=0,002) e burnout (82% vs. 58%, p=0,01) foram significativamente maiores em enfermeiros pediátricos com ansiedade, em comparação com enfermeiros sem essa condição. Os enfermeiros pediátricos que trabalhavam com adolescentes apresentaram maior frequência de burnout, quando comparados aos que não trabalhavam com esse grupo (77% vs. 32%, p=0,0001). A análise multivariada revelou que o cumprimento adequado da quarentena aumentou a presença de ansiedade em 4,6 vezes [OR 4.6(IC 1,1-20,2), p=0,04]. Conclusão: a maioria dos enfermeiros pediátricos atuava na linha de frente da COVID-19, em condições precárias, trabalhando com equipe reduzida e enfrentando perdas expressivas de renda. A ansiedade atual foi um tema relevante e o burnout também foi uma condição mental importante para esses profissionais, reforçando a cultura do bom trabalho em equipe, das práticas de colaboração e do cuidado psicológico/psiquiátrico. Abstract Objective: to assess mental health issues in pediatric nurses during coronavirus pandemic in 2019. Method: cross-sectional study was conducted with pediatric nurses at the Instituto da Criança e do Adolescente based on online self-rated survey about clinical practice and mental health impact during COVID-19 pandemic. Validated self-reported scales for anxiety, depression and burnout were used for assessing these professionals. Results: 107/298 (36%) nurses answered, 90% were female, median age was 41(23-64) years, 68% worked with adolescents, 66% in frontline. Burnout, anxiety and moderate/severe depression occurred in 65%, 72% and 74%, respectively. Lack of standardized treatment protocol for nurses (27%vs.10%, p=0.049), moderate/severe depression (74% vs. 16%, p=0.002) and burnout (82% vs. 58%, p=0.01) were significantly higher in pediatric nurses with anxiety compared to those without. Pediatric nurses that worked with adolescents compared to those that did not showed higher frequency of burnout in the former group (77% vs. 32%, p=0.0001). Multivariable analysis revealed that adequate quarantine adherence increased the presence of anxiety in 4.6 times [OR4.6(CI 1.1-20.2), p=0.04]. Conclusion: most pediatric nurses who had worked in the frontline of COVID-19 were under precarious conditions, working with reduced team, and with an expressive changes in their monthly income. Current anxiety was a relevant issue, burnout was also an important mental condition for these professionals, reinforcing culture of good teamwork, collaboration practices and psychological/psychiatric approach.

Resumo Objetivo: avaliar problemas de saúde mental em enfermeiros pediátricos durante a pandemia causada pelo coronavírus 2019. Método: estudo transversal realizado com enfermeiros pediátricos do Instituto da Criança e do Adolescente, por meio de uma pesquisa online de autoavaliação sobre prática clínica e impacto na saúde mental, durante a pandemia de COVID-19. Foram avaliadas escalas de autoavaliação validadas para ansiedade, depressão e burnout. Resultados: 107/298(36%) enfermeiros responderam, dos quais 90% eram do sexo feminino, a mediana de idade atual era 41(23-64) anos, 68% trabalhavam com adolescentes, 66% trabalhavam na linha de frente. Burnout, ansiedade e depressão moderada/grave ocorreram em 65%, 72% e 74% dos enfermeiros, respectivamente. Falta de protocolo de tratamento padronizado nas enfermarias (27% vs. 10%, p=0,049), depressão moderada/grave (74% vs. 16%, p=0,002) e burnout (82% vs. 58%, p=0,01) foram significativamente maiores em enfermeiros pediátricos com ansiedade, em comparação com enfermeiros sem essa condição. Os enfermeiros pediátricos que trabalhavam com adolescentes apresentaram maior frequência de burnout, quando comparados aos que não trabalhavam com esse grupo (77% vs. 32%, p=0,0001). A análise multivariada revelou que o cumprimento adequado da quarentena aumentou a presença de ansiedade em 4,6 vezes [OR 4.6(IC 1,1-20,2), p=0,04]. Conclusão: a maioria dos enfermeiros pediátricos atuava na linha de frente da COVID-19, em condições precárias, trabalhando com equipe reduzida e enfrentando perdas expressivas de renda. A ansiedade atual foi um tema relevante e o burnout também foi uma condição mental importante para esses profissionais, reforçando a cultura do bom trabalho em equipe, das práticas de colaboração e do cuidado psicológico/psiquiátrico. Resumen Objetivo: evaluar los problemas de salud mental en enfermeros pediátricos durante la pandemia del coronavirus 2019. Método: estudio transversal realizado con enfermeros pediátricos del Instituto da Criança e do Adolescente mediante una encuesta de autoevaluación en línea sobre la práctica clínica y el impacto en la salud mental durante la pandemia de COVID-19. Se evaluaron escalas de autoevaluación validadas para ansiedad, depresión y burnout. Resultados: respondieron 107/298 (36%) de los enfermeros, de los cuales 90% eran del sexo femenino, la mediana de edad actual fue de 41 (23-64) años, 68% trabajaban con adolescentes, 66% trabajaban en primera línea. Burnout, ansiedad y depresión moderada/grave ocurrieron en 65%, 72% y 74% de los enfermeros, respectivamente. Falta de protocolo de tratamiento estandarizado en las enfermerías (27% vs. 10%, p=0,049), depresión moderada/grave (74% vs. 16%, p=0,002) y burnout (82% vs. 58%, p=0,01) fueron significativamente mayores en enfermeros pediátricos con ansiedad en comparación con enfermeros sin esta condición. Los enfermeros pediátricos que trabajaban con adolescentes presentaron mayor frecuencia de burnout en comparación con los que no trabajaban con adolescentes (77% vs. 32%, p=0,0001). El análisis multivariado reveló que el adecuado cumplimiento de la cuarentena aumentó 4,6 veces la presencia de ansiedad [OR 4.6(IC 1,1-20,2), p=0,04]. Conclusión: La mayoría de los enfermeros pediátricos trabajaban en la primera línea de la COVID-19, en condiciones precarias, trabajando con un equipo reducido y enfrentando importantes pérdidas de ingresos. La ansiedad actual fue un tema relevante y el burnout también fue una condición mental importante para estos profesionales, reforzando la cultura del buen trabajo en equipo, las prácticas colaborativas y la atención psicológica/psiquiátrica. Abstract Objective: to assess mental health issues in pediatric nurses during coronavirus pandemic in 2019. Method: cross-sectional study was conducted with pediatric nurses at the Instituto da Criança e do Adolescente based on online self-rated survey about clinical practice and mental health impact during COVID-19 pandemic. Validated self-reported scales for anxiety, depression and burnout were used for assessing these professionals. Results: 107/298 (36%) nurses answered, 90% were female, median age was 41(23-64) years, 68% worked with adolescents, 66% in frontline. Burnout, anxiety and moderate/severe depression occurred in 65%, 72% and 74%, respectively. Lack of standardized treatment protocol for nurses (27%vs.10%, p=0.049), moderate/severe depression (74% vs. 16%, p=0.002) and burnout (82% vs. 58%, p=0.01) were significantly higher in pediatric nurses with anxiety compared to those without. Pediatric nurses that worked with adolescents compared to those that did not showed higher frequency of burnout in the former group (77% vs. 32%, p=0.0001). Multivariable analysis revealed that adequate quarantine adherence increased the presence of anxiety in 4.6 times [OR4.6(CI 1.1-20.2), p=0.04]. Conclusion: most pediatric nurses who had worked in the frontline of COVID-19 were under precarious conditions, working with reduced team, and with an expressive changes in their monthly income. Current anxiety was a relevant issue, burnout was also an important mental condition for these professionals, reinforcing culture of good teamwork, collaboration practices and psychological/psychiatric approach.

Abstract Objective: the care of adolescents with or without a chronic disease must complete, standardized and focused on individual demands and the transition process to adult care and adherence to treatment. This study aimed to characterize the care provided by nurses from the state of São Paulo who work with adolescents. Method: this is a cross-sectional and descriptive study on the care provided to adolescents by nurses in São Paulo, based on the answers to a self-administered questionnaire, available in the REDCap tool between August 2018 and October 2019. Results: participants answered 1632 questionnaires. Only 38% of nurses work with adolescents, 11.2% exclusively. Professionals were divided according to the median length of professional experience in groups A and B (≤5 years and >5 years). Drug addiction (p=0.01) and working with a multidisciplinary team (p=0.04) were significantly more reported in group B. Routine follow-up (p=0.02) and questioning about sexual or physical violence (p=0.03) were significantly more performed by professionals from group A. Conclusion: this study identified the need for a care protocol that can be replicated on a large scale and that includes the treatment and the particularities of adolescents to improve adherence and the transition into adult care. Resumen Objetivo: el cuidado de los adolescentes con o sin enfermedad crónica debe ser completo, estandarizado y centrado en las demandas individuales y en el proceso de transición a la atención para adultos y la adherencia al tratamiento. Este estudio tuvo como objetivo caracterizar los cuidados prestados por el personal de enfermería del estado de São Paulo que trabaja con adolescentes. Método: se trata de un estudio transversal y descriptivo sobre los cuidados prestados a los adolescentes por el personal de enfermería de São Paulo, a partir de las respuestas a un cuestionario autoadministrado, disponible en la herramienta REDCap entre agosto de 2018 y octubre de 2019. Resultados: los participantes respondieron a 1.632 cuestionarios. Solo el 38% del personal de enfermería trabaja con adolescentes, el 11,2% de forma exclusiva. Los profesionales se dividieron según la duración media de la experiencia profesional en los grupos A y B (≤5 años y >5 años). La drogadicción (p=0,01) y el trabajo con un equipo multidisciplinar (p=0,04) fueron significativamente más reportados en el grupo B. El seguimiento rutinario (p=0,02) y las preguntas sobre violencia sexual o física (p=0,03) fueron significativamente más realizadas por los profesionales del grupo A. Conclusión: este estudio identificó la necesidad de un protocolo de atención que pueda ser replicado a gran escala y que incluya el tratamiento y las particularidades de los adolescentes para mejorar la adherencia y la transición a la atención de adultos. Resumo Objetivo: o cuidado de adolescentes com ou sem doença crônica deve ser completo, padronizado e focado nas demandas individuais e no processo de transição para a assistência ao adulto e adesão ao tratamento. Este estudo teve como objetivo caracterizar a assistência prestada por enfermeiros do estado de São Paulo que atuam com adolescentes. Método: trata-se de um estudo transversal e descritivo sobre a assistência prestada a adolescentes por enfermeiros de São Paulo, a partir das respostas a um questionário autoaplicável, disponível no instrumento REDCap entre agosto de 2018 e outubro de 2019. Resultados: os participantes responderam a 1632 questionários. Apenas 38% dos enfermeiros trabalham com adolescentes, e 11,2% deles de forma exclusiva. Os profissionais foram divididos de acordo com a mediana de tempo de experiência profissional nos Grupos A e B (≤ 5 anos e > 5 anos). A dependência de drogas (p=0,01) e o trabalho com uma equipe multidisciplinar (p=0,04) foram significativamente mais relatados no Grupo B. O acompanhamento rotineiro (p=0,02) e o questionamento sobre violência sexual ou física (p=0,03) foram significativamente mais realizados pelos profissionais do Grupo A. Conclusão: este estudo identificou a necessidade de um protocolo de assistência que possa ser replicado em larga escala e que inclua o tratamento e as particularidades dos adolescentes para melhorar a adesão e a transição para o cuidado do adulto.

Annual vaccination is the most effective way to prevent seasonal influenza illness. Instituto Butantan (IB) performed clinical studies with its 2013, 2014 and 2015 seasonal trivalent influenza vaccines (inactivated split-virion). Prospective cohort studies were carried out to describe the safety and immunogenicity of Instituto Butantan influenza vaccines, in healthy adults and elderly, from 2013 to 2015. Immediately after the informed consent was signed, participants underwent blood collection followed by vaccination. On study days 1, 2 and 3 post-vaccination participants were contacted by the staff to evaluate the occurrence of solicited (local and systemic) and non-solicited adverse reactions. On study day 21 (+7) subjects returned to the clinical site for final safety assessments and blood collection to evaluate post-vaccination immunogenicity. The immunogenicity analyses were performed by means of hemagglutination inhibition (HI) assay. The immunogenicity endpoints were: seroprotection (SPR) and seroconversion (SCR) rates and the geometric mean HI antibody titer ratio (GMTR). The 2013 study was conducted at the Centro de Referência para Imunobiológicos Especiais (CRIE) and at the Centro de Pesquisa Clínica do Instituto da Criança, Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo while the 2014 and 2015 studies were conducted at CRIE. The vaccine composition followed the WHO recommendation for the Southern hemisphere seasonal influenza vaccine. Forty-seven healthy adults and 13 elderly participated in the 2013 study, 60 healthy adults and 60 elderly in the 2014 study, and 62 healthy adults and 57 elderly in the 2015 study. In the 2013, 2014 and 2015 studies, pain was the most frequent local adverse reaction and headache the most frequent systemic adverse reaction. All observed adverse reactions were classified as mild or moderate and none as severe. SPR >70% and SPR >60% were observed in adults and elderly, respectively, for the three vaccine viruses, in the 2013, 2014 and 2015 studies. SCR >40% was observed in adults, for the three vaccine viruses, only in the 2014 study and SCR >30% was observed in the elderly, for the three vaccine viruses, only in the 2013 and 2014 studies. GMTR >2.5 among adults, for the three vaccine viruses was only observed in the 2013 study and GMTR >2.0 was observed among elderly, for the three vaccine viruses, in the 2013, 2014 and 2015 studies. The 2013, 2014 and 2015 seasonal influenza vaccines produced by Instituto Butantan were safe and immunogenic according to the immunogenicity criteria defined by the European Medicines Agency (EMA).

ObjectivesThis study aimed to investigate subclinical left ventricle (LV) systolic dysfunction in juvenile dermatomyositis (JDM) using two-dimensional speckle-tracking echocardiography (2DST). Possible associations between LV deformation impairment and disease activity/cumulative damage were also evaluated.MethodsThirty-five consecutive JDM patients without cardiac symptoms and 35 healthy volunteers were enrolled. Clinical data were collected from medical records, and echocardiograms were performed by a pediatric cardiologist, unaware of patients’ conditions.ResultsPatients and controls had similar age (12.6 ± 0.7 vs.12.5 ± 0.6; p = 0.97) and gender (11F:24M vs.11F:24M; p = 1.0). Median of JDM duration was 4.6 (0.04–17.6) years, and only 6/35 (17%) had active disease (disease activity score (DAS > 3)). Conventional echocardiogram revealed preserved LV ejection fraction (EF) (≥ 55%) in all individuals. In JDM, 2DST identified reduction of LV longitudinal [−22(−17.2 to −27.9) % vs. −23(−20.8 to −27.4) %; p = 0.028)] and circumferential −23.9 ± 2.8% vs. −26.7 ± 2.9%; p = 0.0002) strain. Lower longitudinal strain was associated with DAS >3 −19.9(−17.2 to −26.5)% vs. −22.1−18.9 to −27.9)%; p = 0.046], MDI extent > 0 [−19(−17.2 to −22.5)% vs. −22.1−19.2 to −27.9)%; p = 0.0008], MDI severity > 0 [−19(−17.2 to −22.1)% vs. −22.3(−20.3 to −27.9)%; p = 0.0001] and calcinosis[−20.6(−17.2 to −23)% vs. −22.3(−20.3 to −27.9)%; p = 0.03]. Lower circumferential strain was associated with MDI extent > 0 (−22.1 ± 3.87% vs. −24.4 ± 2.3%; p = 0.039), MDI severity > 0 (−21.7 ± 3% vs. 24.7 ± 2.3%; p = 0.004) and calcinosis (−22.5 ± 3.3% vs. −24.8 ± 2.1%; p = 0.02). There was a negative correlation between longitudinal strain and cumulative dose of prednisone (r = −0.44; p = 0.009) and methotrexate (r = −0.33; p = 0.0008).ConclusionsLV 2DST detected early systolic myocardial compromise in asymptomatic pediatric JDM patients, with preserved EF. Longitudinal strain impairment was associated with disease activity and cumulative damage, whereas circumferential strain impairment was associated exclusively with cumulative damage.Key Points:• Serious cardiac involvement is rare but has been associated with death in juvenile dermatomyositis.• Two-dimensional speckle tracking stands out for the identification of subclinical myocardial compromise in juvenile dermatomyositis.• Longitudinal strain impairment is associated with disease activity and cumulative damage, whereas circumferential strain impairment is associated exclusively with cumulative damage.

Resumo Objetivo: o cuidado de adolescentes com ou sem doença crônica deve ser completo, padronizado e focado nas demandas individuais e no processo de transição para a assistência ao adulto e adesão ao tratamento. Este estudo teve como objetivo caracterizar a assistência prestada por enfermeiros do estado de São Paulo que atuam com adolescentes. Método: trata-se de um estudo transversal e descritivo sobre a assistência prestada a adolescentes por enfermeiros de São Paulo, a partir das respostas a um questionário autoaplicável, disponível no instrumento REDCap entre agosto de 2018 e outubro de 2019. Resultados: os participantes responderam a 1632 questionários. Apenas 38% dos enfermeiros trabalham com adolescentes, e 11,2% deles de forma exclusiva. Os profissionais foram divididos de acordo com a mediana de tempo de experiência profissional nos Grupos A e B (≤ 5 anos e > 5 anos). A dependência de drogas (p=0,01) e o trabalho com uma equipe multidisciplinar (p=0,04) foram significativamente mais relatados no Grupo B. O acompanhamento rotineiro (p=0,02) e o questionamento sobre violência sexual ou física (p=0,03) foram significativamente mais realizados pelos profissionais do Grupo A. Conclusão: este estudo identificou a necessidade de um protocolo de assistência que possa ser replicado em larga escala e que inclua o tratamento e as particularidades dos adolescentes para melhorar a adesão e a transição para o cuidado do adulto. Abstract Objective: the care of adolescents with or without a chronic disease must complete, standardized and focused on individual demands and the transition process to adult care and adherence to treatment. This study aimed to characterize the care provided by nurses from the state of São Paulo who work with adolescents. Method: this is a cross-sectional and descriptive study on the care provided to adolescents by nurses in São Paulo, based on the answers to a self-administered questionnaire, available in the REDCap tool between August 2018 and October 2019. Results: participants answered 1632 questionnaires. Only 38% of nurses work with adolescents, 11.2% exclusively. Professionals were divided according to the median length of professional experience in groups A and B (≤5 years and >5 years). Drug addiction (p=0.01) and working with a multidisciplinary team (p=0.04) were significantly more reported in group B. Routine follow-up (p=0.02) and questioning about sexual or physical violence (p=0.03) were significantly more performed by professionals from group A. Conclusion: this study identified the need for a care protocol that can be replicated on a large scale and that includes the treatment and the particularities of adolescents to improve adherence and the transition into adult care. Resumen Objetivo: el cuidado de los adolescentes con o sin enfermedad crónica debe ser completo, estandarizado y centrado en las demandas individuales y en el proceso de transición a la atención para adultos y la adherencia al tratamiento. Este estudio tuvo como objetivo caracterizar los cuidados prestados por el personal de enfermería del estado de São Paulo que trabaja con adolescentes. Método: se trata de un estudio transversal y descriptivo sobre los cuidados prestados a los adolescentes por el personal de enfermería de São Paulo, a partir de las respuestas a un cuestionario autoadministrado, disponible en la herramienta REDCap entre agosto de 2018 y octubre de 2019. Resultados: los participantes respondieron a 1.632 cuestionarios. Solo el 38% del personal de enfermería trabaja con adolescentes, el 11,2% de forma exclusiva. Los profesionales se dividieron según la duración media de la experiencia profesional en los grupos A y B (≤5 años y >5 años). La drogadicción (p=0,01) y el trabajo con un equipo multidisciplinar (p=0,04) fueron significativamente más reportados en el grupo B. El seguimiento rutinario (p=0,02) y las preguntas sobre violencia sexual o física (p=0,03) fueron significativamente más realizadas por los profesionales del grupo A. Conclusión: este estudio identificó la necesidad de un protocolo de atención que pueda ser replicado a gran escala y que incluya el tratamiento y las particularidades de los adolescentes para mejorar la adherencia y la transición a la atención de adultos.

Resumen Objetivo: el cuidado de los adolescentes con o sin enfermedad crónica debe ser completo, estandarizado y centrado en las demandas individuales y en el proceso de transición a la atención para adultos y la adherencia al tratamiento. Este estudio tuvo como objetivo caracterizar los cuidados prestados por el personal de enfermería del estado de São Paulo que trabaja con adolescentes. Método: se trata de un estudio transversal y descriptivo sobre los cuidados prestados a los adolescentes por el personal de enfermería de São Paulo, a partir de las respuestas a un cuestionario autoadministrado, disponible en la herramienta REDCap entre agosto de 2018 y octubre de 2019. Resultados: los participantes respondieron a 1.632 cuestionarios. Solo el 38% del personal de enfermería trabaja con adolescentes, el 11,2% de forma exclusiva. Los profesionales se dividieron según la duración media de la experiencia profesional en los grupos A y B (≤5 años y >5 años). La drogadicción (p=0,01) y el trabajo con un equipo multidisciplinar (p=0,04) fueron significativamente más reportados en el grupo B. El seguimiento rutinario (p=0,02) y las preguntas sobre violencia sexual o física (p=0,03) fueron significativamente más realizadas por los profesionales del grupo A. Conclusión: este estudio identificó la necesidad de un protocolo de atención que pueda ser replicado a gran escala y que incluya el tratamiento y las particularidades de los adolescentes para mejorar la adherencia y la transición a la atención de adultos. Abstract Objective: the care of adolescents with or without a chronic disease must complete, standardized and focused on individual demands and the transition process to adult care and adherence to treatment. This study aimed to characterize the care provided by nurses from the state of São Paulo who work with adolescents. Method: this is a cross-sectional and descriptive study on the care provided to adolescents by nurses in São Paulo, based on the answers to a self-administered questionnaire, available in the REDCap tool between August 2018 and October 2019. Results: participants answered 1632 questionnaires. Only 38% of nurses work with adolescents, 11.2% exclusively. Professionals were divided according to the median length of professional experience in groups A and B (≤5 years and >5 years). Drug addiction (p=0.01) and working with a multidisciplinary team (p=0.04) were significantly more reported in group B. Routine follow-up (p=0.02) and questioning about sexual or physical violence (p=0.03) were significantly more performed by professionals from group A. Conclusion: this study identified the need for a care protocol that can be replicated on a large scale and that includes the treatment and the particularities of adolescents to improve adherence and the transition into adult care. Resumo Objetivo: o cuidado de adolescentes com ou sem doença crônica deve ser completo, padronizado e focado nas demandas individuais e no processo de transição para a assistência ao adulto e adesão ao tratamento. Este estudo teve como objetivo caracterizar a assistência prestada por enfermeiros do estado de São Paulo que atuam com adolescentes. Método: trata-se de um estudo transversal e descritivo sobre a assistência prestada a adolescentes por enfermeiros de São Paulo, a partir das respostas a um questionário autoaplicável, disponível no instrumento REDCap entre agosto de 2018 e outubro de 2019. Resultados: os participantes responderam a 1632 questionários. Apenas 38% dos enfermeiros trabalham com adolescentes, e 11,2% deles de forma exclusiva. Os profissionais foram divididos de acordo com a mediana de tempo de experiência profissional nos Grupos A e B (≤ 5 anos e > 5 anos). A dependência de drogas (p=0,01) e o trabalho com uma equipe multidisciplinar (p=0,04) foram significativamente mais relatados no Grupo B. O acompanhamento rotineiro (p=0,02) e o questionamento sobre violência sexual ou física (p=0,03) foram significativamente mais realizados pelos profissionais do Grupo A. Conclusão: este estudo identificou a necessidade de um protocolo de assistência que possa ser replicado em larga escala e que inclua o tratamento e as particularidades dos adolescentes para melhorar a adesão e a transição para o cuidado do adulto.

Risdiplam is an orally administered therapy that modifies pre-mRNA splicing of the survival of motor neuron 2 (SMN2) gene and is approved for the treatment of spinal muscular atrophy. The FIREFISH study is investigating the safety and efficacy of risdiplam in treated infants with type 1 spinal muscular atrophy versus historical controls. The primary endpoint of part 2 of the FIREFISH study showed that infants with type 1 spinal muscular atrophy attained the ability to sit without support for at least 5 s after 12 months of treatment. Here, we report on the safety and efficacy of risdiplam in FIREFISH part 2 over 24 months of treatment. FIREFISH is an ongoing, multicentre, open-label, two-part study. In FIREFISH part 2, eligible infants (aged 1–7 months at enrolment, with a genetically confirmed diagnosis of spinal muscular atrophy, and two SMN2 gene copies) were enrolled in 14 hospitals in ten countries across Europe, North America, South America, and Asia. Risdiplam was orally administered once daily at 0·2 mg/kg for infants between 5 months and 2 years of age; once an infant reached 2 years of age, the dose was increased to 0·25 mg/kg. Infants younger than 5 months started at 0·04 mg/kg (infants between 1 month and 3 months old) or 0·08 mg/kg (infants between 3 months and 5 months old), and this starting dose was adjusted to 0·2 mg/kg once pharmacokinetic data were available for each infant. The primary and secondary endpoints included in the statistical hierarchy and assessed at month 12 have been reported previously. Here we present the remainder of the secondary efficacy endpoints that were included in the statistical hierarchy at month 24: the ability to sit without support for at least 30 s, to stand alone, and to walk alone, as assessed by the Bayley Scales of Infant and Toddler Development, third edition gross motor subscale. These three endpoints were compared with a performance criterion of 5% that was defined based on the natural history of type 1 spinal muscular atrophy; the results were considered statistically significant if the lower limit of the two-sided 90% CI was above the 5% threshold. FIREFISH is registered with ClinicalTrials.gov, NCT02913482. Recruitment is closed; the 36-month extension period of the study is ongoing. Between March 13 and Nov 19, 2018, 41 infants were enrolled in FIREFISH part 2. After 24 months of treatment, 38 infants were ongoing in the study and 18 infants (44% [90% CI 31–58]) were able to sit without support for at least 30 s (p<0·0001 compared with the performance criterion derived from the natural history of untreated infants with type 1 spinal muscular atrophy). No infants could stand alone (0 [90% CI 0–7]) or walk alone (0 [0–7]) after 24 months of treatment. The most frequently reported adverse event was upper respiratory tract infection, in 22 infants (54%); the most common serious adverse events were pneumonia in 16 infants (39%) and respiratory distress in three infants (7%). Treatment with risdiplam over 24 months resulted in continual improvements in motor function and achievement of developmental motor milestones. The FIREFISH open-label extension phase will provide additional evidence regarding long-term safety and efficacy of risdiplam. F Hoffmann-La Roche.