title: Systematic review of tools to measure outcomes for young children with autism spectrum disorder.
abstract: 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.
  
  
  OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.
  
  
  BACKGROUND
  This study is registered as PROSPERO CRD42012002223.
  
  
  BACKGROUND
  The National Institute for Health Research Health Technology Assessment programme.
authors.affiliation: Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK.
authors.forename: Helen
authors.initials: H
authors.lastname: McConachie
authors.affiliation: Institute of Neuroscience, Newcastle University, Newcastle upon Tyne, UK.
authors.forename: Jeremy R
authors.initials: JR
authors.lastname: Parr
authors.affiliation: Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK.
authors.forename: Magdalena
authors.initials: M
authors.lastname: Glod
authors.affiliation: School of Sociology, Social Policy and Social Work, Queen's University Belfast, Belfast, Northern Ireland, UK.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Hanratty
authors.affiliation: School of Sociology, Social Policy and Social Work, Queen's University Belfast, Belfast, Northern Ireland, UK.
authors.forename: Nuala
authors.initials: N
authors.lastname: Livingstone
authors.affiliation: Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK.
authors.forename: Inalegwu P
authors.initials: IP
authors.lastname: Oono
authors.affiliation: Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK.
authors.forename: Shannon
authors.initials: S
authors.lastname: Robalino
authors.affiliation: Guy's and St Thomas' NHS Foundation Trust, London, UK.
authors.forename: Gillian
authors.initials: G
authors.lastname: Baird
authors.affiliation: Social Policy Research Unit, University of York, York, UK.
authors.forename: Bryony
authors.initials: B
authors.lastname: Beresford
authors.affiliation: Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, UK.
authors.forename: Tony
authors.initials: T
authors.lastname: Charman
authors.affiliation: National Autistic Society North East Autism Resource Centre, Newcastle upon Tyne, UK.
authors.forename: Deborah
authors.initials: D
authors.lastname: Garland
authors.affiliation: Institute of Brain, Behaviour and Mental Health, University of Manchester, Manchester, UK.
authors.forename: Jonathan
authors.initials: J
authors.lastname: Green
authors.affiliation: Guy's and St Thomas' NHS Foundation Trust, London, UK.
authors.forename: Paul
authors.initials: P
authors.lastname: Gringras
authors.affiliation: School of Education, University of Birmingham, Birmingham, UK.
authors.forename: Glenys
authors.initials: G
authors.lastname: Jones
authors.affiliation: Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK.
authors.forename: James
authors.initials: J
authors.lastname: Law
authors.affiliation: Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK.
authors.forename: Ann S
authors.initials: AS
authors.lastname: Le Couteur
authors.affiliation: School of Sociology, Social Policy and Social Work, Queen's University Belfast, Belfast, Northern Ireland, UK.
authors.forename: Geraldine
authors.initials: G
authors.lastname: Macdonald
authors.affiliation: Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK.
authors.forename: Elaine M
authors.initials: EM
authors.lastname: McColl
authors.affiliation: PenCRU, Child Health Group, University of Exeter Medical School, University of Exeter, Exeter, UK.
authors.forename: Christopher
authors.initials: C
authors.lastname: Morris
authors.affiliation: Institute of Neuroscience, Newcastle University, Newcastle upon Tyne, UK.
authors.forename: Jacqueline
authors.initials: J
authors.lastname: Rodgers
authors.affiliation: Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, UK.
authors.forename: Emily
authors.initials: E
authors.lastname: Simonoff
authors.affiliation: Department of Epidemiology and Biostatistics, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Caroline B
authors.initials: CB
authors.lastname: Terwee
authors.affiliation: University of Melbourne, Royal Children's Hospital and Murdoch Childrens Research Institute, Melbourne, Australia.
authors.forename: Katrina
authors.initials: K
authors.lastname: Williams
mesh_terms: D000367:Age Factors; D000067877:Autism Spectrum Disorder / Q000191:economics / Q000523:psychology / Q000628:therapy*; D001519:Behavior; D002648:Child; D002657:Child Development; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007223:Infant; D007398:Interpersonal Relations; D007407:Interviews as Topic; D007802:Language; D008297:Male; D017063:Outcome Assessment, Health Care / Q000379:methods*; D010290:Parents; D011788:Quality of Life; D015203:Reproducibility of Results