Proxy-reported sensory measures for children and adolescents with neurodevelopmental disorders: A systematic review

Nicolette Soler; Reinie Cordier; Iain E Perkes; Russell C Dale; Paula Bray

doi:10.1111/dmcn.15367

Proxy-reported sensory measures for children and adolescents with neurodevelopmental disorders: A systematic review

Dev Med Child Neurol. 2023 Feb;65(2):185-199. doi: 10.1111/dmcn.15367. Epub 2022 Jul 30.

Authors

Nicolette Soler^{1

2}, Reinie Cordier^{3

4}, Iain E Perkes^{1

5

6}, Russell C Dale^{2

7

8}, Paula Bray⁹

Affiliations

¹ School of Health Sciences, University of Newcastle, Newcastle, NSW, Australia.
² Children's Hospital Westmead Clinical School, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia.
³ Curtin School of Allied Health, Faculty of Health Sciences, Curtin University, Perth, WA, Australia.
⁴ Department of Social Work, Education and Community Wellbeing, Northumbria University, Newcastle, UK.
⁵ Discipline of Psychiatry & Mental Health and Discipline of Paediatrics & Children's Health, School of Clinical Medicine, University of New South Wales Medicine & Health, University of New South Wales, Sydney, NSW, Australia.
⁶ School of Women's and Children's Health, Faculty of Medicine and Health, University of New South Wales, Sydney, NSW, Australia.
⁷ Department of Paediatric Neurology, The Children's Hospital at Westmead, Sydney, NSW, Australia.
⁸ Kids Neuroscience Centre, and Brain and Mind Centre, University of Sydney, Sydney, NSW, Australia.
⁹ Sydney School of Health Sciences, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia.

Abstract
in English, Somali

Aim: To determine the quality and utility of proxy-reported sensory measures for children and adolescents with neurodevelopmental disorders (such as autism spectrum disorder, attention-deficit/hyperactivity disorder, movement disorders, and intellectual disability).

Method: We systematically searched 11 databases. We applied the updated Consensus-based Standards for the selection of health Measurement INstruments (COSMIN) Risk of Bias checklist and criteria for good measurement properties to evaluate instrument development and psychometric properties. Findings were summarized using a COSMIN adaptation of Grading of Recommendations, Assessment, Development and Evaluations.

Results: From 11 databases, 6748 articles were screened. Ninety-one full-length articles were reviewed after removing excluded studies and manual searches conducted by two reviewers. Data were extracted for 12 measures from 20 articles. Of the 12 measures, only three provided sufficient data to evaluate content validity and psychometric measurement properties. The Participation and Sensory Environment Questionnaire-Home (PSEQ-H) was the only measure that satisfied moderate content validity and moderate-to-high quality for measurement properties. These properties included: structural validity, hypothesis testing for construct validity, internal consistency, reliability, and measurement error.

Interpretation: One measure, the PSEQ-H, met eight criteria for good measurement properties. To facilitate evidence-informed clinical decision-making, all psychometric properties of all 12 sensory-based, proxy-reported measures were presented. The importance of consumer engagement in measure development and the need for ongoing evaluation of measures against contemporaneous standards is recommended.

What this paper adds: Three measures provided studies on content validity and psychometric measurement properties. The Participation and Sensory Environment Questionnaire-Home had moderate quality for content validity studies and high-to-moderate quality evidence for psychometric properties. The Participation and Sensory Environment Questionnaire was the only measure that included consumer involvement through qualitative interviews and pilot testing. Consumer involvement in measure development is important for content validity. Ongoing evaluation of measures against contemporaneous standards is recommended.

Three measures provided studies on content validity and psychometric measurement properties.
The Participation and Sensory Environment Questionnaire‐Home had moderate quality for content validity studies and high‐to‐moderate quality evidence for psychometric properties.
The Participation and Sensory Environment Questionnaire was the only measure that included consumer involvement through qualitative interviews and pilot testing.
Consumer involvement in measure development is important for content validity.
Ongoing evaluation of measures against contemporaneous standards is recommended.

Symptoms resulting from sensory dysregulation can impact a child's ability to participate in daily activities. To measure these symptoms parents of children with neurodevelopmental disorders complete sensory measures. This systematic review aimed to provide clinicians and researchers with evidence to guide selection of the available proxy‐reported sensory measures. Following a comprehensive literature search across 11 databases, 20 articles relating to twelve measures were included in this review. These 12 measures were evaluated in relation to the 10 psychometric properties using COSMIN (Consensus‐based Standards for the selection of health Measurement INstruments) as the appraisal tool. Only one measure, the Participation and Sensory Environment Questionnaire‐Home Scale, met 8 of the 10 criteria for good measurement properties. This systematic review highlights the importance of consumer engagement in measurement design, ensuring measures are meaningful and relevant to consumers to better inform treatment planning and response.

Publication types

Systematic Review
Review
Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Autism Spectrum Disorder* / diagnosis
Child
Consensus
Humans
Psychometrics
Reproducibility of Results
Surveys and Questionnaires

Abstract in English, Somali

Publication types

MeSH terms

Abstract
in English, Somali