Categoria: Mapeamento

Resumo:

We provide a systematic review of epidemiological surveys of autistic disorder and pervasive developmental disorders (PDDs) worldwide. A secondary aim was to consider the possible impact of geographic, cultural/ethnic, and socioeconomic factors on prevalence estimates and on clinical presentation of PDD. Based on the evidence reviewed, the median of prevalence estimates of autism spectrum disorders was 62/10 000. While existing estimates are variable, the evidence reviewed does not support differences in PDD prevalence by geographic region nor of a strong impact of ethnic/cultural or socioeconomic factors. However, power to detect such effects is seriously limited in existing data sets, particularly in low-income countries. While it is clear that prevalence estimates have increased over time and these vary in different neighboring and distant regions, these findings most likely represent broadening of the diagnostic concets, diagnostic switching from other developmental disabilities to PDD, service availability, and awareness of autistic spectrum disorders in both the lay and professional public. The lack of evidence from the majority of the world’s population suggests a critical need for further research and capacity building in low- and middle-income countries. Autism Res 2012, 5: 160–179. © 2012 International Society for Autism Research, Wiley Periodicals, Inc.

Palavras-chave: epidemiology; prevalence; global health; low- and middle-income countries

Resumo:

Abstract
Lack of access to services and support is an important issue for people with autism, but in low- and middle-income countries there is a lack of data on this problem. The aims of this study were to describe the challenges and priorities, identify barriers to care, and map stigma among families of individuals with autism in Latin America. This survey was undertaken by the Red Espectro Autista Latinoamerica network, a coalition of researchers/clinicians from six Latin American countries; it comprised 2942 caregivers of children with autism from Brazil, Argentina, Chile, Uruguay, Venezuela, and the Dominican-Republic, who completed the Spanish/Portuguese version of the Caregiver Needs Survey. The survey showed that the main priorities were greater community awareness and improvements in education. The main barriers to care were waiting lists (50.2%), treatment costs (35.2%), and lack of specialized services (26.1%). Stigma experienced by families was frequent: one-third reported feeling discriminated against and helpless for having a child with autism, 48.8% reported some type of financial problem, 47.4% had to reduce work hours, and 35.5% had to stop working because of their child’s autism. This survey describes the main needs/challenges faced by individuals with autism in Latin America, helping to build data-driven strategies at a national/regional level.

Lay abstract
Approximately 6 million individuals with autism spectrum disorder live in Latin America. In order to strengthen autism spectrum disorder research collaborations and awareness in the region, the Latin American Autism Spectrum Network (Red Espectro Autista Latinoamerica) was constituted in 2015, comprising researchers and clinicians from the following six countries: Brazil Argentina, Chile, Uruguay, Venezuela, and the Dominican Republic. This first multisite study from the Red Espectro Autista Latinoamerica network aims to describe the challenges and priorities to identify barriers to care and to map stigma among families of individuals with autism spectrum disorder living in Latin America. A total of 2942 caregivers from these six countries completed an online survey showing that the main priorities were greater community awareness and improvements in the educational system for individuals with autism spectrum disorder. In addition to that, the main barriers to care were related to lack of structure, mainly waiting lists (50.2%), high treatment costs (35.2%), and lack of specialized services (26.1%). Stigma experienced by families was frequent: one third reported feeling discriminated against and helpless for having a child with autism spectrum disorder. Also, 48.8% of the caregivers declared financial problems, 47.4% of them had to cut down work hours, and 35.5% had to leave their jobs because of their child’s autism spectrum disorder. This is a pioneer study providing a description of the needs and challenges faced by families affected by autism spectrum disorder in Latin America, helping to build data-driven strategies at the national and regional levels. Keywords autism, economic costs, healthcare utilization, stigma, treatment barriers

Resumo:
This pilot study presents preliminary results concerning the prevalence of Pervasive Developmental
Disorder (PDD) in South America. It was a three-phase study conducted in a typical town in Southeast Brazil. Case definition was based in a combination of standardized instruments and clinical evaluations by experts. The prevalence of PDD was 27.2/10,000 (95% CI: 17.6–36.8) and some hypotheses were raised to explain this low frequency. Clinical findings of PDD cases were consistent with previous data, such as, male preponderance, more children diagnosed with PDD-NOS than with autistic disorder, and
half of them born from older mothers. Moreover, the study raised concerns about treatment of cases, because identification of PDD had been late and access to services has been very limited.

Referência:

• 1. Fleitlich-Bilyk B, Goodman R. Prevalence of child and adolescent psychiatric disorders in southeast Brazil. J Am Acad Child Adolesc Psychiatry. 2004;(6)43:727-34.
• 2. Paula CS, Duarte CS, Bordin IA. Prevalence of mental health problems in children and adolescents from the outskirts of Sao Paulo City: treatment needs and service capacity evaluation. Rev Bras Psiquiatr. 2007;29:11-7.
• ^3. Pathways to a mental health policy for children and youth / Ministry of Health, Bureau of Health Care, Department of Strategic Programmatic Actions – Brasilia: Publisher of the Ministry of Health, 2005.
• 4. Zavaschi MLS, Estrella CHG. Vulnerable children and adolescents: the interdisciplinary approach in psychosocial care centers – Porto Alegre: Artmed, 2009.
• 5. Ministério da Saúde do Brasil. Portaria nş 336/GM de 19 de fevereiro de 2002. Diário Oficial da União. http://portal.saude.gov.br/portal/arquivos/pdf/Portaria%20GM%20336-2002.pdf 2002.

Referência:

BRENTANI, H.; PAULA CS; BORDINI, D.; ROLIM, D.; SATO, F.; PORTOLESE, J.; PACIFICO, M. C.; MCCRACKEN, J. T. Autism spectrum disorders: an overview on diagnosis and treatment. Revista Brasileira de Psiquiatria (São Paulo. 1999. Impresso)., v.35, p.S62 – S72, 2013.

Resumo:

Pervasive developmental disorders are now commonly referred to as autism spectrum disorders (ASDs). ASDs present with a range of severity and impairments, and often are a cause of severe disability, representing a major public health concern. The diagnostic criteria require delays or abnormal functioning in social interaction, language, and/or imaginative play within the first 3 years of life, resulting in a deviation from the developmental pattern expected for the age. Because establishing a diagnosis of ASD is possible as early as 18-24 months of age, clinicians should strive to identify and begin intervention in children with ASD as soon as signs are manifest. Increasing efforts are underway to make ASD screening universal in pediatric healthcare. Given the crucial importance of early identification and multiple modalities of treatment for ASD, this review will summarize the diagnostic criteria, key areas for assessment by clinicians, specific scales and instruments for assessment, and discussion of evidence-based treatment programs and the role of specific drug

therapies for symptom management.

Keywords: Autistic disorder; pervasive development disorders; diagnosis, treatment.

Referência:

PORTOLESE, J.; BORDINI, D.; LOWENTHAL, R.; ZACHI, E. C.; Paula CS. Mapeamento dos serviços que prestam atendimento a pessoas com transtorno do espectro autista no brasil. Cadernos de pós graduação em distúrbios do desenvolvimento (online)., v.7, p.79 – 91, 2017.

Resumo:

Introdução: no Brasil, o Sistema Único de Saúde-SUS deveria atender a maior parte da assistência a indivíduos com Transtorno do Espectro do Autismo-TEA, mas não existem dados disponíveis neste campo. Objetivo: mapear as instituições brasileiras que prestam atendimento a indivíduos com TEA.

Método: foram coletadas informações através de cadastros da Secretaria Estadual de Saúde, das Associações de Amigos do Autista-AMAs e consultas na internet. As instituições foram contatadas visando ao levantamento de informações sobre o público-alvo e características do serviço.

Resultados: verificaram-se 650 instituições, das quais a maioria concentra-se nas regiões Sudeste e Sul. A maior parte consiste nas Associações de Pais Amigos dos Excepcionais-APAEs, seguidas pelos Centros de Atenção Psicossocial Infanto-juvenil-CAPSIs e AMAs. Há predominância do atendimento à infância e adolescência. O atendimento multiprofissional foi mais frequente e dentre as abordagens teóricas destacam-se os métodos TEACCH, Psicoeducação e ABA. Conclusões: o número de instituições para atendimento aos indivíduos com TEA é insuficiente, distribuído de modo irregular no país e carece no atendimento a jovens e adultos. A variabilidade das características dos serviços revela falta de padronização quanto aos procedimentos adotados. O conhecimento dessas informações pode auxiliar no desenvolvimento de novas propostas de assistência com base em evidencias científicas.

Palavras-chave: autismo, serviços de atendimento, intervenção multidisciplinar, Brasil.

Referência:

RIBEIRO, S. H.; PAULA CS; BORDINI, D.; MARI, J. J.; CAETANO, S. Barriers to early identification of autism in Brazil. REVISTA BRASILEIRA DE PSIQUIATRIA., p.1 – 1, 2017.

Resumo:

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 middleincome 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 months; range 39-197 months).

Results: Mothers had their first concerns regarding ASD when children were 23.6611.6 months old, but formal diagnosis occurred at a mean 6 SD age of 59.6640.5 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.

Keywords: Autism spectrum disorder; parental identification; delayed diagnosis; low-and middleincome countries