Systematic review of tools to measure outcomes for young children with autism spectrum disorder

BACKGROUND: The needs of children with autism spectrum disorder (ASD) are complex and this is reflected in the number and diversity of outcomes assessed and measurement tools used to collect evidence about children's progress. Relevant outcomes include improvement in core ASD impairments, such as communication, social awareness, sensory sensitivities and repetitiveness; skills such as social functioning and play; participation outcomes such as social inclusion; and parent and family impact.

OBJECTIVES: To examine the measurement properties of tools used to measure progress and outcomes in children with ASD up to the age of 6 years. To identify outcome areas regarded as important by people with ASD and parents.

METHODS: The MeASURe (Measurement in Autism Spectrum disorder Under Review) research collaboration included ASD experts and review methodologists. We undertook systematic review of tools used in ASD early intervention and observational studies from 1992 to 2013; systematic review, using the COSMIN checklist (Consensus-based Standards for the selection of health Measurement Instruments) of papers addressing the measurement properties of identified tools in children with ASD; and synthesis of evidence and gaps. The review design and process was informed throughout by consultation with stakeholders including parents, young people with ASD, clinicians and researchers.

RESULTS: The conceptual framework developed for the review was drawn from the International Classification of Functioning, Disability and Health, including the domains 'Impairments', 'Activity Level Indicators', 'Participation', and 'Family Measures'. In review 1, 10,154 papers were sifted - 3091 by full text - and data extracted from 184; in total, 131 tools were identified, excluding observational coding, study-specific measures and those not in English. In review 2, 2665 papers were sifted and data concerning measurement properties of 57 (43%) tools were extracted from 128 papers. Evidence for the measurement properties of the reviewed tools was combined with information about their accessibility and presentation. Twelve tools were identified as having the strongest supporting evidence, the majority measuring autism characteristics and problem behaviour. The patchy evidence and limited scope of outcomes measured mean these tools do not constitute a 'recommended battery' for use. In particular, there is little evidence that the identified tools would be good at detecting change in intervention studies. The obvious gaps in available outcome measurement include well-being and participation outcomes for children, and family quality-of-life outcomes, domains particularly valued by our informants (young people with ASD and parents).

CONCLUSIONS: This is the first systematic review of the quality and appropriateness of tools designed to monitor progress and outcomes of young children with ASD. Although it was not possible to recommend fully robust tools at this stage, the review consolidates what is known about the field and will act as a benchmark for future developments. With input from parents and other stakeholders, recommendations are made about priority targets for research.

FUTURE WORK: Priorities include development of a tool to measure child quality of life in ASD, and validation of a potential primary outcome tool for trials of early social communication intervention.

STUDY REGISTRATION: This study is registered as PROSPERO CRD42012002223.

FUNDING: The National Institute for Health Research Health Technology Assessment programme.

A relação terapêutica como pacto de cuidados (Perspectiva de Paul Ricoeur)

O capítulo é dedicado à reflexão, partindo de Ricoeur, sobre alguns aspectos que podem fornecer alicerce à tematização dos problemas do cuidar da Pessoa em vários níveis da Enfermagem. Importa-nos, acima de tudo, que, na procura da racionalidade própria da vida humana, as questões éticas da decisão do agir não fiquem soterradas por normas ou preceitos deontológicos adoptados acrítica e mecanicamente. Julgamos, então, necessário um esforço reflexivo práxico, pois sem reflexão orientada para a acção sairá malogrado o ideal de cuidar, que é, ao mesmo tempo, ideal de compreender, de respeitar e de servir responsavelmente o Outro, através do cultivo de relações interpessoais competentes, em termos científicos, técnicos e éticos.

Análise custo benefício de gestões alternativas do paúl de Lagos pelo método dos preços hedónicos/contigenciais com recursos a análise ANOVA sic: valorização do paul de Lagos

Dissertação mest., Gestão e Conservação da Natureza, Universidade do Algarve, 2009

Repply to: Brito, A.C., Brotas, V., Caetano, M., Coutinho, T.P., Bordalo, A.A., Icely, J., Neto, J.M., Serôdio, J., Moita, T. (2012) "Defining phytoplankton class boundaries in Portuguese transitional waters: an evaluation of the ecological quality status according to the Water Framework Directive" [Ecological Indicators 19, 5-14]

We write to comment on the recently published paper “Defining phytoplankton class boundaries in Portuguese transitional waters: an evaluation of the ecological quality status according to the Water Framework Directive” (Brito et al., 2012). This paper presents an integrated methodology to analyse the ecological quality status of several Portuguese transitional waters, using phytoplanktonrelated metrics. One of the systems analysed, the Guadiana estuary in southern Portugal, is considered the most problematic estuary, with its upstream water bodies classified as Poor in terms of ecological status. We strongly disagree with this conclusion and we would like to raise awareness to some methodological constraints that, in our opinion, are the basis of such deceptive conclusions and should therefore not be neglected when using phytoplankton to assess the ecological status of natural waters.

Arbeitszeit und Sonntagsruhe : Stellungnahmen zur Sonntagsarbeit als Beitrag kirchlicher Sozialkritik im 19. Jahrhundert

Mit der Forderung nach einem arbeitsfreien Sonntag haben die Kirchen im 19. Jahrhundert in die Diskussion um die Wochenarbeitszeit eingegriffen. Auch wenn das Thema der menschlichen Arbeit in der evangelischen Theologie des vergangenen Jahrhunderts nicht in dem Maße bedacht worden ist, wie es die neuzeitliche Veränderung im Verständnis der Arbeit und die Industrialisierung erfordert hätten, so lässt sie die bekannte Formel vom "Versagen der Kirche gegenüber der sozialen Frage" nicht aufrechterhalten. Die vorliegende Untersuchung fragt nach der Begründung der Sonntagsruhe für die Arbeit: Kann Sonntagsruhe im Gegensatz zu Freizeit als ein Begriff bestimmt werden, der in keinem komplementären Verhältnis zur Arbeit steht, nicht im Sinn eines Primats der Ruhe, sondern in dem Sinn, daß der Sonntag Kontrapost ist gegen den Primat der Arbeit in der Gegenwart?

Der Kampf um den freien Sonntag im 19. Jahrhundert

Im Aufsatz geht es um das kirchliche und politische Engagement im Kampf gegen die Sonntagsarbeit im 19. Jahrhundert.

TAG & RELEASE Volume 19, No. 1 March 2014

Tag & Release is the newsletter for the South Carolina Governor's Cup Billfishing Series, an official program of the South Carolina Department of Natural Resources in cooperation with the South Carolina Department of Parks, Recreation and Tourism and the Harry R.E. Hampton Memorial Wildlife Fund.

TAG & RELEASE Volume 19, No. 2 May 2014

Tag & Release is the newsletter for the South Carolina Governor's Cup Billfishing Series, an official program of the South Carolina Department of Natural Resources in cooperation with the South Carolina Department of Parks, Recreation and Tourism and the Harry R.E. Hampton Memorial Wildlife Fund.

TAG & RELEASE Volume 19, No. 4 Nov. 2014

Tag & Release is the newsletter for the South Carolina Governor's Cup Billfishing Series, an official program of the South Carolina Department of Natural Resources in cooperation with the South Carolina Department of Parks, Recreation and Tourism and the Harry R.E. Hampton Memorial Wildlife Fund.

Configurações músico-literárias na obra de Paul Bowles : música, violência e política

Tese de doutoramento, Estudos de Literatura e de Cultura (Estudos Americanos), Universidade de Lisboa, Faculdade de Letras, 2014