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The online version of this article (doi:10.1007/s10803-017-3282-2) contains supplementary material, which is available to authorized users.
The broader study has been published as McConachie, H., Parr, J. R., Glod, M., Hanratty, J., Livingstone, N., Oono, I. P., et al. (2015). Systematic review of tools to measure outcomes for young children with autism spectrum disorder. Health Technology Assessment, 19(41), doi:10.3310/hta19410.
NIHR guidance on further publication includes: “NIHR considers that publication of its research, necessarily in briefer format, in specialist and general journals, is important for the dissemination and uptake of research findings and therefore expects grant holders to seek such publication. Although the possibility that this may constitute dual publication may cause concerns, it is considered that the NIHR Journals Library, which contains comprehensive accounts of whole funded projects, is different from other smaller journal articles and therefore publication in both formats is acceptable.”
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.
Supplementary material 1 (DOCX 17 KB)10803_2017_3282_MOESM1_ESM.docx
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- Parents Suggest Which Indicators of Progress and Outcomes Should be Measured in Young Children with Autism Spectrum Disorder
Ann Le Couteur
Jeremy R. Parr
- Springer US