Evidence map›Paper›PMID 28861649›Full record

SynthesisJournal of autism and developmental disorders2018

Parents Suggest Which Indicators of Progress and Outcomes Should be Measured in Young Children with Autism Spectrum Disorder.

Helen McConachie, Nuala Livingstone, Christopher Morris, Bryony Beresford, Ann Le Couteur, Paul Gringras, Deborah Garland, Glenys Jones, Geraldine Macdonald, Katrina Williams and 1 more

Abstract readSystematic Review
PubMed Full text at PMC Publisher
In one paragraph

Synthesis in Journal of autism and developmental disorders, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 33 papers, 4 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
33citing papers in PubMed, 4 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

33 citing papers in PubMed, 4 syntheses or guidelines pooled it.

  1. Pooled it
  2. Pooled it
  3. Pooled it
  4. Pooled it
  5. Trial
  6. Trial
  7. Trial
  8. Article
  9. Through Parents' Eyes: Perspectives on Child Development and Family Experience During ESDM Intervention.Autism research : official journal of the International Society for Autism Research · 2026
    Article
  10. Article
  11. Content Validity of the K-CATJournal of autism and developmental disorders · 2026
    Article
  12. Review
  13. Review
  14. Article
  15. Article
  16. Trajectory research in children with an autism diagnosis: A scoping review.Autism : the international journal of research and practice · 2024
    Article
  17. Acetylcholinesterase inhibitors for autistic spectrum disorders.The Cochrane database of systematic reviews · 2023
    Review
  18. Article
  19. Article
  20. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Helen McConachieInstitute of Health and Society, Newcastle University, Sir James Spence Institute 3rd floor, Royal Victoria Infirmary, Newcastle upon Tyne, NE1 4LP, UK. helen.mcconachie@ncl.ac.uk.ORCID 0000-0002-0713-3987
Nuala LivingstoneSchool of Sociology, Social Policy and Social Work, Queen's University Belfast, Belfast, Northern Ireland, UK.
Christopher MorrisPenCRU, Child Health Group, University of Exeter Medical School, Exeter, UK.
Bryony BeresfordSocial Policy Research Unit, University of York, York, UK.
Ann Le CouteurInstitute of Health and Society, Newcastle University, Sir James Spence Institute 3rd floor, Royal Victoria Infirmary, Newcastle upon Tyne, NE1 4LP, UK.
Paul GringrasGuy's and St Thomas' NHS Foundation Trust, London, UK.
Deborah GarlandNational Autistic Society, North East Resource Centre, Newcastle upon Tyne, UK.
Glenys JonesSchool of Education, University of Birmingham, Birmingham, UK.
Geraldine MacdonaldSchool of Sociology, Social Policy and Social Work, Queen's University Belfast, Belfast, Northern Ireland, UK.
Katrina WilliamsDevelopmental Medicine, Royal Children's Hospital, University of Melbourne and Murdoch Childrens Research Institute, Parkville, Australia.
Jeremy R ParrInstitute of Neuroscience, Newcastle University, Newcastle upon Tyne, UK.

Funding

Health Technology Assessment Programme HTA:11/22/03
6 · The paper itself

Abstract

Evaluation of interventions for children with autism spectrum disorder (ASD) is hampered by the multitude of outcomes measured and tools used. Measurement in research with young children tends to focus on core impairments in ASD. We conducted a systematic review of qualitative studies of what matters to parents. Parent advisory groups completed structured activities to explore their perceptions of the relative importance of a wide range of outcome constructs. Their highest ranked outcomes impacted directly on everyday life and functioning (anxiety, distress, hypersensitivity, sleep problems, happiness, relationships with brothers and sisters, and parent stress). Collaboration between professionals, researchers and parents/carers is required to determine an agreed core set of outcomes to use across evaluation research.

Indexed as

Autism Spectrum DisorderCommunity ParticipationHumansParentsQualitative ResearchTreatment OutcomeConsultationMeasurementOutcomesParentsYoung children

Identifiers

PMID28861649
PMCPMC5861173

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.