title: Outcome measures in intervention trials for adults with autism spectrum disorders; a systematic review of assessments of core autism features and associated emotional and behavioural problems.
abstract: A systematic review was conducted of outcome measures used in treatment trials for older adolescents and adults with autism spectrum disorders (ASDs). Of 818 titles only 30 articles (19 of which involved pharmacological treatments) were identified that met inclusion criteria (sample size > 5; mean age of group > 15 years; mean IQ > 30; ASD diagnosis confirmed; use of objective ASD outcome measures; focus on symptoms core to or typically associated with ASDs). Selected studies included randomized and placebo-controlled trials, retrospective assessment studies, case series and open label or case-control trials. Use of outcome measures varied with frequent use of non-standardized assessments, very little use of measures designed specifically for individuals with ASD or of instruments focusing on core ASD deficits, such as communication or social functioning. Most commonly used were the Clinical Global Impression (CGI) rating scale and the Yale-Brown Obsessive Compulsive Scale (Y-BOCS). The strengths or deficiencies of the outcome measures used were not systematically evaluated. Although there are now many well controlled treatment trials for children with ASDs, adult intervention research is very limited. The lack of valid and reliable outcome measures for adults with ASDs compromises attempts at treatment evaluation.
authors.affiliation: Department of Health Sciences, University of Leicester, Leicester General Hospital, Leicester, UK.
authors.forename: Traolach S
authors.initials: TS
authors.lastname: Brugha
authors.affiliation: Department of Public Health, Epidemiology and Biostatistics, University of Birmingham, Edgbaston, Birmingham, UK.
authors.forename: Lucy
authors.initials: L
authors.lastname: Doos
authors.affiliation: Department of Psychology, Institute of Psychiatry, King's College London, London, UK.
authors.forename: Althea
authors.initials: A
authors.lastname: Tempier
authors.affiliation: Centre for Disability Research and Policy, Brain & Mind Research Institute, The University Of Sydney, Camperdown, NSW, Australia.
authors.forename: Stewart
authors.initials: S
authors.lastname: Einfeld
authors.affiliation: Department of Psychology, Institute of Psychiatry, King's College London, London, UK.|Centre for Disability Research and Policy, Brain & Mind Research Institute, The University Of Sydney, Camperdown, NSW, Australia.
authors.forename: Patricia
authors.initials: P
authors.lastname: Howlin
mesh_terms: D000328:Adult; D000067877:Autism Spectrum Disorder / Q000150:complications / Q000628:therapy; D002986:Clinical Trials as Topic / Q000706:statistics & numerical data; D016206:Databases, Bibliographic / Q000706:statistics & numerical data; D005260:Female; D006801:Humans; D008297:Male; D019964:Mood Disorders / Q000209:etiology*; D017063:Outcome Assessment, Health Care; D000066553:Problem Behavior / Q000523:psychology*
keywords: adult; autism; clinical trials; scale evaluation; systematic review