Barriers to early identification of autism in Brazil

Objective: Parents of children with autism spectrum disorders (ASD) seem to perceive that their child's development is not following the normal pattern as early as the first year of life. However, ASD children may not receive a diagnosis until they are of preschool age, especially in low- and middle-income countries. The objective of this study was to evaluate the pathway between initial parental concerns about atypical child development and ASD diagnosis in Brazil. Methods: Nineteen mothers whose children had been diagnosed with ASD participated and were interviewed. The ASD group consisted of two girls and 17 boys, with a mean age of 93.0 months (SD 48.4 monthsrange 39-197 months). Results: Mothers had their first concerns regarding ASD when children were 23.6 +/- 11.6 months old, but formal diagnosis occurred at a mean +/- SD age of 59.6 +/- 40.5 months, corresponding to a 3-year delay. Most mothers felt discouraged to address their concerns due to negative experiences with health professionals. Conclusion: In Brazil, mothers perceived the first signs of ASD in their children at an age similar to that reported in other countries, but the diagnosis of ASD seemed to be delayed. Consistent with the literature, mothers reported negative experiences with health professionals during the pathway to achieving ASD diagnosis.Coordenacao de Aperfeicoamento de Pessoal de Nivel Superior (CAPES)Univ Fed Sao Paulo UNIFESP, Dept Psiquiatria, Ambulatorio Cognicao Social Marcos Tomanik Mercad, Sao Paulo, SP, BrazilUniv Presbiteriana Mackenzie, Programa Posgrad Disturbios Desenvolvimento, Sao Paulo, SP, BrazilUniv Fed Sao Paulo UNIFESP, Dept Psiquiatria, Ambulatorio Cognicao Social Marcos Tomanik Mercad, Sao Paulo, SP, BrazilWeb of Scienc

Impact of training in autism for primary care providers: a pilot study

Objective: To evaluate the impact of a training program on autism spectrum disorder (ASD) identification offered to Brazilian health professionals. Methods: Twenty-two primary care providers participated in five 3-hour weekly training sessions. Results: The trained providers significantly improved their ASD knowledge after training in comparison with pre-training (mean score, 6.73 vs. 9.18, p < 0.01). Clinical practice also changed: 4 months after the training program, the providers had referred six times as many suspected cases of ASD to a specialized mental health service in comparison with the previous 4 months. Conclusion: This pilot training model seems a promising, feasible, and inexpensive way to improve early identification of ASD in the primary care system.Universidade Federal de São Paulo (UNIFESP) Department of Psychiatry Child and Adolescent Psychiatry Unit (UPIA)Santa Casa de Misericórdia de São Paulo School of Medical Sciences Unit of Excellence in Autism Spectrum DisorderUniversidade Federal de São Paulo (UNIFESP) Department of PsychiatryFaculdade de Medicina de São José do Rio Preto Department of Psychiatry and Medical PsychologyUniversity of London King's College Institute of PsychiatryUniversidade Presbiteriana Mackenzie Graduate Program in Developmental DisordersUNIFESP, Department of Psychiatry Child and Adolescent Psychiatry Unit (UPIA)UNIFESP, Department of PsychiatrySciEL

Profile of Service Use and Barriers to Access to Care among Brazilian Children and Adolescents with Autism Spectrum Disorders

Delayed diagnosis and a lack of adequate care for people with autism spectrum disorder (ASD) are related to worse outcomes and quality of life. This study aimed to identify the profile of service use, barriers to access care, and factors related to those barriers in Brazilian families with children with ASD. A total of 927 families with children with ASD (3-17 years) from five Brazilian regions completed an online version of the Caregivers Needs Survey. Results showed that the most used services were behavioral interventions and pharmacotherapy, while the most used professionals were neurologists, nutritionists, speech therapists, psychiatrists, psychologists, and pediatricians. The main barriers included waiting lists, costs, and the absence of services or treatment. Service use varied according to age, the region of residence, type of health care system used, and the parents/caregivers\u27 education. Access to behavioral interventions was more frequent among users of the private system/health insurance and families whose caregivers had higher education. The absence of specialized services/treatments was less frequent among residents of state capitals and families whose caregivers had higher levels of education. This study highlights how families with children/adolescents with ASD in Brazil face significant barriers to access care related to sociodemographic factors

Musculoskeletal injuries among operating room nurses: results from a multicenter survey in Rome, Italy

Aim: Chronic disorders of the musculoskeletal system, particularly low back pain (LBP), are increasing and represent a social and economic problem of growing importance, especially if correlated with working conditions. Health care workers are at higher risk of developing LBP during work shifts in the hospital. The aim of this study was to assess the prevalence of LBP among operating room nurses and to investigate the risk factors for musculoskeletal injuries in the operating room. Methods: We carried out a cross-sectional study that included operating room nurses from nine hospitals. Information on sociodemographic characteristics, lifestyle habits, working activity and psychological attitude of nurses was collected using an anonymous self-administered structured questionnaire. We evaluated the association of frequency, localization and intensity of LBP (FLI) with qualitative variables, making use of univariate analysis, chi-square test and Fisher's exact test. Multiple logistic regression analysis was performed to identify the variables that affected the FLI. The covariates included in the model were the variables that had a p 35 years vs. age <35 (OR = 2.68; 95% CI = 1.17–6.18) and diurnal work shift vs. diurnal/ nocturnal (OR = 4.00; 95% CI = 1.72–9.0) represent risk factors associated with FLI, while physical activity is a protective factor (OR = 0.47; 95% CI = 0.20–1.08). Conclusion: The data suggest that it is important to promote new programs of prevention based on professional training and physical activity among nurses and to improve the organization of work shifts in the hospital

ITALIAN CANCER FIGURES - REPORT 2015: The burden of rare cancers in Italy = I TUMORI IN ITALIA - RAPPORTO 2015: I tumori rari in Italia

OBJECTIVES: This collaborative study, based on data collected by the network of Italian Cancer Registries (AIRTUM), describes the burden of rare cancers in Italy. Estimated number of new rare cancer cases yearly diagnosed (incidence), proportion of patients alive after diagnosis (survival), and estimated number of people still alive after a new cancer diagnosis (prevalence) are provided for about 200 different cancer entities. MATERIALS AND METHODS: Data herein presented were provided by AIRTUM population- based cancer registries (CRs), covering nowadays 52% of the Italian population. This monograph uses the AIRTUM database (January 2015), which includes all malignant cancer cases diagnosed between 1976 and 2010. All cases are coded according to the International Classification of Diseases for Oncology (ICD-O-3). Data underwent standard quality checks (described in the AIRTUM data management protocol) and were checked against rare-cancer specific quality indicators proposed and published by RARECARE and HAEMACARE (www.rarecarenet.eu; www.haemacare.eu). The definition and list of rare cancers proposed by the RARECAREnet "Information Network on Rare Cancers" project were adopted: rare cancers are entities (defined as a combination of topographical and morphological codes of the ICD-O-3) having an incidence rate of less than 6 per 100,000 per year in the European population. This monograph presents 198 rare cancers grouped in 14 major groups. Crude incidence rates were estimated as the number of all new cancers occurring in 2000-2010 divided by the overall population at risk, for males and females (also for gender-specific tumours).The proportion of rare cancers out of the total cancers (rare and common) by site was also calculated. Incidence rates by sex and age are reported. The expected number of new cases in 2015 in Italy was estimated assuming the incidence in Italy to be the same as in the AIRTUM area. One- and 5-year relative survival estimates of cases aged 0-99 years diagnosed between 2000 and 2008 in the AIRTUM database, and followed up to 31 December 2009, were calculated using complete cohort survival analysis. To estimate the observed prevalence in Italy, incidence and follow-up data from 11 CRs for the period 1992-2006 were used, with a prevalence index date of 1 January 2007. Observed prevalence in the general population was disentangled by time prior to the reference date (≤2 years, 2-5 years, ≤15 years). To calculate the complete prevalence proportion at 1 January 2007 in Italy, the 15-year observed prevalence was corrected by the completeness index, in order to account for those cancer survivors diagnosed before the cancer registry activity started. The completeness index by cancer and age was obtained by means of statistical regression models, using incidence and survival data available in the European RARECAREnet data. RESULTS: In total, 339,403 tumours were included in the incidence analysis. The annual incidence rate (IR) of all 198 rare cancers in the period 2000-2010 was 147 per 100,000 per year, corresponding to about 89,000 new diagnoses in Italy each year, accounting for 25% of all cancer. Five cancers, rare at European level, were not rare in Italy because their IR was higher than 6 per 100,000; these tumours were: diffuse large B-cell lymphoma and squamous cell carcinoma of larynx (whose IRs in Italy were 7 per 100,000), multiple myeloma (IR: 8 per 100,000), hepatocellular carcinoma (IR: 9 per 100,000) and carcinoma of thyroid gland (IR: 14 per 100,000). Among the remaining 193 rare cancers, more than two thirds (No. 139) had an annual IR &lt;0.5 per 100,000, accounting for about 7,100 new cancers cases; for 25 cancer types, the IR ranged between 0.5 and 1 per 100,000, accounting for about 10,000 new diagnoses; while for 29 cancer types the IR was between 1 and 6 per 100,000, accounting for about 41,000 new cancer cases. Among all rare cancers diagnosed in Italy, 7% were rare haematological diseases (IR: 41 per 100,000), 18% were solid rare cancers. Among the latter, the rare epithelial tumours of the digestive system were the most common (23%, IR: 26 per 100,000), followed by epithelial tumours of head and neck (17%, IR: 19) and rare cancers of the female genital system (17%, IR: 17), endocrine tumours (13% including thyroid carcinomas and less than 1% with an IR of 0.4 excluding thyroid carcinomas), sarcomas (8%, IR: 9 per 100,000), central nervous system tumours and rare epithelial tumours of the thoracic cavity (5%with an IR equal to 6 and 5 per 100,000, respectively). The remaining (rare male genital tumours, IR: 4 per 100,000; tumours of eye, IR: 0.7 per 100,000; neuroendocrine tumours, IR: 4 per 100,000; embryonal tumours, IR: 0.4 per 100,000; rare skin tumours and malignant melanoma of mucosae, IR: 0.8 per 100,000) each constituted &lt;4% of all solid rare cancers. Patients with rare cancers were on average younger than those with common cancers. Essentially, all childhood cancers were rare, while after age 40 years, the common cancers (breast, prostate, colon, rectum, and lung) became increasingly more frequent. For 254,821 rare cancers diagnosed in 2000-2008, 5-year RS was on average 55%, lower than the corresponding figures for patients with common cancers (68%). RS was lower for rare cancers than for common cancers at 1 year and continued to diverge up to 3 years, while the gap remained constant from 3 to 5 years after diagnosis. For rare and common cancers, survival decreased with increasing age. Five-year RS was similar and high for both rare and common cancers up to 54 years; it decreased with age, especially after 54 years, with the elderly (75+ years) having a 37% and 20% lower survival than those aged 55-64 years for rare and common cancers, respectively. We estimated that about 900,000 people were alive in Italy with a previous diagnosis of a rare cancer in 2010 (prevalence). The highest prevalence was observed for rare haematological diseases (278 per 100,000) and rare tumours of the female genital system (265 per 100,000). Very low prevalence (&lt;10 prt 100,000) was observed for rare epithelial skin cancers, for rare epithelial tumours of the digestive system and rare epithelial tumours of the thoracic cavity. COMMENTS: One in four cancers cases diagnosed in Italy is a rare cancer, in agreement with estimates of 24% calculated in Europe overall. In Italy, the group of all rare cancers combined, include 5 cancer types with an IR&gt;6 per 100,000 in Italy, in particular thyroid cancer (IR: 14 per 100,000).The exclusion of thyroid carcinoma from rare cancers reduces the proportion of them in Italy in 2010 to 22%. Differences in incidence across population can be due to the different distribution of risk factors (whether environmental, lifestyle, occupational, or genetic), heterogeneous diagnostic intensity activity, as well as different diagnostic capacity; moreover heterogeneity in accuracy of registration may determine some minor differences in the account of rare cancers. Rare cancers had worse prognosis than common cancers at 1, 3, and 5 years from diagnosis. Differences between rare and common cancers were small 1 year after diagnosis, but survival for rare cancers declined more markedly thereafter, consistent with the idea that treatments for rare cancers are less effective than those for common cancers. However, differences in stage at diagnosis could not be excluded, as 1- and 3-year RS for rare cancers was lower than the corresponding figures for common cancers. Moreover, rare cancers include many cancer entities with a bad prognosis (5-year RS &lt;50%): cancer of head and neck, oesophagus, small intestine, ovary, brain, biliary tract, liver, pleura, multiple myeloma, acute myeloid and lymphatic leukaemia; in contrast, most common cancer cases are breast, prostate, and colorectal cancers, which have a good prognosis. The high prevalence observed for rare haematological diseases and rare tumours of the female genital system is due to their high incidence (the majority of haematological diseases are rare and gynaecological cancers added up to fairly high incidence rates) and relatively good prognosis. The low prevalence of rare epithelial tumours of the digestive system was due to the low survival rates of the majority of tumours included in this group (oesophagus, stomach, small intestine, pancreas, and liver), regardless of the high incidence rate of rare epithelial cancers of these sites. This AIRTUM study confirms that rare cancers are a major public health problem in Italy and provides quantitative estimations, for the first time in Italy, to a problem long known to exist. This monograph provides detailed epidemiologic indicators for almost 200 rare cancers, the majority of which (72%) are very rare (IR&lt;0.5 per 100,000). These data are of major interest for different stakeholders. Health care planners can find useful information herein to properly plan and think of how to reorganise health care services. Researchers now have numbers to design clinical trials considering alternative study designs and statistical approaches. Population-based cancer registries with good quality data are the best source of information to describe the rare cancer burden in a population

Avaliação do impacto de um curso de capacitação de profissionais da atenção primária na identificação e encaminhamento de crianças e adolescentes com transtorno do espectro autista - estudo piloto

Introdução: Os Transtornos do Espectro Autista (TEA) compreendem um grupo de indivíduos com alterações do neurodesenvolvimento definidas por anormalidades precoces, qualitativas, abrangentes e com diferentes graus de comprometimento em habilidades de interação social recíproca e habilidades na comunicação social, geralmente acompanhados por padrão de comportamento e interesses restritos. O diagnóstico e tratamento precoce são importantes para o melhor prognóstico destes pacientes. Objetivos: Este estudo teve como objetivo avaliar o impacto de um curso de capacitação sobre Transtornos do Espectro Autista (TEA) para pediatras e outros profissionais da atenção primária na região norte da cidade de São Paulo no Brasil. Métodos: O curso foi realizado em cinco encontros semanais, 3 horas cada: 2 horas de palestras ministradas por especialistas em TEA, além de uma hora de discussão de casos e dúvidas. Os participantes, 22 profissionais de unidades básicas de saúde (UBS) da região norte da cidade de São Paulo, foram avaliados antes e após o treinamento através de um questionário estruturado com 13 questões sobre conhecimentos gerais sobre TEA. Além disso responderam questionário de avaliação geral do curso. Resultados: Em geral, houve uma melhora estatisticamente significativa em relação ao conhecimento desses profissionais após o treinamento, em comparação com o conhecimento prévio: média 6,73 x 8,18 (p < 0,01), melhora de 37%. Os resultados também mostraram uma mudança na prática clínica pois durante os 4 meses posteriores ao treinamento, os profissionais treinados encaminharam 6 vezes mais casos suspeitos de TEA para o Centro de Atenção Psicossocial Infanto-Juvenil (CAPSI) local em comparação aos 4 meses anteriores ao treinamento. Além disso, todos os casos suspeitos tinham sintomas clínicos compatíveis com TEA ou eram suficientemente complexos e exigiam uma avaliação especializada para o diagnóstico diferencial. Discussão e Conclusões: o modelo de capacitação proposto, apesar de apresentar limitações (amostra pequena, realizado em apenas uma região de São Paulo, avaliação com questionário próprio), mostrou-se factível, bem aceito e bem avaliado pelos participantes, além de mostrar-se capaz de melhorar o nível de conhecimento dos participantes, assim como sua prática clínica, sensibilizando-os para identificar casos suspeitos de TEA e encaminhá-los para atendimento especializado (CAPSI) para ser mais bem avaliado e tratado adequadamente.Dados abertos - Sucupira - Teses e dissertações (2013 a 2016

Treino parental com vídeo modelação para a aquisição de habilidades sociais em crianças com autismo: estudo multicêntrico

Introduction: Applied behavior analysis (ABA) is an intervention with proven effectiveness in treating socio-communicative and functional impairments of individuals with Autistic Spectrum Disorder (ASD). In Brazil, we have a small number of trained professionals and a large unmet demand in the public health network. Main objective: to test the effectiveness of a model of parental training using video modeling in improving intellectual quotient (IQ), social/communicative functionality and symptomatology in children with Autistic Spectrum Disorder (ASD) and Intellectual Disability (ID). Secondary objectives: to develop audiovisual material to training professionals and family members, and to evaluate the trajectories of the acquisition of the target behaviors (eye contact and shared attention), taking into account clinical factors in the intervention group (gender, age, social functionality, and IQ in ASD children). Method: Study design: A single blind randomized clinical trial. The sample consisted of 66 children, with 34 in the control group and 32 in the intervention group, individually randomized from three outpatient universities in São Paulo: The Federal University of São Paulo, the University of São Paulo, and the Universidade Presbiteriana Mackenzie. Patients and families underwent pre- and post-intervention assessments to compare the changes resulting from the intervention. The following instruments were applied: The Autism Diagnostic Interview-Revised (ADI-R); the Vineland Adaptive Behavior Scale I; Snijders-Oomen Nonverbal Intelligence Test-SON-R 2½-7; the Autism Behavior Checklist (ABC); and the Hamilton Depression Rating Scale. Caregivers completed daily records throughout the training, noting the procedures' execution and what kind of help the child needed to complete the training—intervention program. The clinical trial had a total duration of 32 weeks, 22 of which were direct training with parents and the other 10 for evaluations. The 15 videos used first addressed the underlying concepts necessary to carry out the training: preparing the environment, handling disruptive behaviors, accessing preferred items, and learning without error; and then taught the methods of total, partial, and gestural physical assistance used to develop independent eye contact and shared attention. The last video is a summary of the total process. Results: There was a statistically significant improvement in Vineland's xii communication scores in the CACE analysis (Cohen's d = 0.260). There was a nonstatistically significant decrease in the symptoms of autism (total ABC score - Cohen's d = 0,558) and a significant increase in nonverbal IQ in the intervention group (Cohen's d = 0, 433). The statistical analysis showed the effectiveness of the model in improving the acquisition of the target behaviors (eye contact and shared attention), particularly in older children, with better previous levels of IQ and functionality. Conclusions: the development and proof of the effectiveness of this video modeling program may have a major impact on the treatment of children with ASD because it will enable the training of a large number of professionals and family members in all regions of the country.Introdução: A análise aplicada do comportamento (ABA) é uma intervenção de eficácia comprovada no tratamento de prejuízos sócio comunicativos e funcionais de indivíduos com Transtorno do Espectro Autista (TEA). No Brasil, contamos com um pequeno número de profissionais capacitados e uma grande demanda não atendida na rede pública de saúde. Objetivo principal: testar a eficácia de um modelo de treino de pais por vídeo modelação para a melhora no quociente intelectual (QI), funcionalidade social/comunicativa e sintomatologia em crianças com Transtorno do Espectro Autista (TEA) e Deficiência Intelectual (DI). Objetivos secundários: desenvolver material audiovisual para permitir o treinamento de profissionais e familiares através da vídeo-modelação e avaliar as trajetórias de aquisição dos comportamentos-alvos, contato visual e atenção compartilhada, levando em consideração fatores clínicos do grupo intervenção (sexo, idade, funcionalidade social e QI das crianças com TEA) Método: Desenho do estudo: ensaio clínico simples cego e randomizado. A amostra foi composta por 66 crianças divididas em 34 no grupo controle e 32 no grupo intervenção, randomizadas individualmente de ambulatórios três universidades de São Paulo: Universidade Federal de São Paulo, Universidade de São Paulo e Universidade Presbiteriana Mackenzie. Pacientes e famílias realizaram avaliações pré e pós-intervenção para compararmos as mudanças decorrentes da intervenção. Foram aplicados os seguintes instrumentos: Autism Diagnostic Interview Revised (ADI-R); Vineland Adaptive Behaviour Scale I; Snijders-Oomen Nonverbal Intelligence Test- SON-R 2½-7; Autism Behaviour Checklist (ABC); Hamilton Depression Rating Scale. Fichas de registros diários foram preenchidas pelos cuidadores ao longo de todo o treinamento, anotando a execução dos procedimentos e qual modalidade de ajuda a criança necessitou para completar o treino. Programa de intervenção. O ensaio clínico teve duração total de 32 semanas sendo 22 de treinamento direto com os pais e as demais de avaliações. Os conteúdos dos 15 vídeos abordavam conceitos prévios necessários ao treinamento: preparação do ambiente, manejo de comportamentos disruptivos, acesso a itens de preferência, aprendizagem sem erro e depois ensino de procedimentos de ajuda física total, leve, gestual e independente x para contato visual e procedimentos de ajuda física total, leve, gestual e independente para atenção compartilhada. O último vídeo é uma síntese do processo total. Resultados: Houve uma melhora estatisticamente significativa nas pontuações de comunicação da Vineland (d de Cohen = 0,260). Houve uma diminuição não estatisticamente significativa na sintomatologia do autismo (pontuação total do ABC - (d de Cohen = 0,558) e um aumento significativo no QI não verbal no grupo de intervenção (d de Cohen = 0, 433). A análise estatística permitiu comprovar a eficácia do modelo para melhora dos objetivos primários estipulados e a aquisição de comportamentos-alvos (contato visual e atenção compartilhada) de forma independente ao final do treinamento; mais rapidamente no grupo de crianças mais velhas, com melhores níveis prévios de QI e funcionalidade. Conclusões: o desenvolvimento e a comprovação da eficácia deste programa de videomodelação poderão ter grande impacto no tratamento de crianças com TEA pois possibilitará treinamento de grande quantidade de profissionais e familiares, de modo acessível a todas as regiões do país.Dados abertos - Sucupira - Teses e dissertações (2020