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Enhancing cognitive accessibility in assessments for children with neurodisability: development and implementation of an adaptation tracking questionnaire.
Linköpings universitet, Avdelningen för funktionsnedsättning och samhälle.ORCID iD: 0000-0002-5456-1597
Linköpings universitet, Avdelningen för funktionsnedsättning och samhälle.ORCID iD: 0000-0002-0446-0827
Department of Psychology, School of Health, Care, and Social Welfare, Mälardalen University, Västerås, Sweden.
Murdoch Children’s Research Institute, The University of Melbourne, Melbourne, Australia.
2025 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 47, no 18, p. 4830-4839Article in journal (Refereed) Published
Abstract [en]

PURPOSE: The range of impairments in children with neurodisability (ND) complicates data collection, yet individualising materials and procedures could enable more children to self-report. This study introduces the Cognitive Accessibility Tracking Questionnaire (CATQ), designed to monitor changes enhancing accessibility ("adaptations") in interview-administered patient-reported outcome measures (PROMs). The CATQ is used in a longitudinal study of mental health and participation in children with ND investigating adaptation use and its utility in assessing the risk of bias introduced by these adaptations.

MATERIALS AND METHODS: The 13-item CATQ was developed with experts in ND and augmentative and alternative communication. Predictors of PROM adaptations were analysed using linear regression; the overall change was tested with a t-test and item-specific agreement with Cohen's weighted kappa and proportion of agreement.

RESULTS: Six interviewers conducted 69 interviews, interviewing 43 children once or twice. Common adaptations included explaining/replacing concepts (56.5% of interviews), exemplifying (60.9%), or repeating questions/instructions (50.7%). Child age, seizure history, verbal communication abilities, adaptive behaviour, and interviewer identity predicted adaptation use. Adaptation use did not differ between the two data collection points, 13 months apart.

CONCLUSION: The CATQ enhances methodological rigor by tracking adaptations and facilitating risk-of-bias-assessment by analysing adaptation changes and factors affecting their use.

Place, publisher, year, edition, pages
Taylor & Francis, 2025. Vol. 47, no 18, p. 4830-4839
Keywords [en]
Self-report, adaptations, children, mental health, methods, neurodevelopmental disorders, neurodisability
National Category
Applied Psychology
Identifiers
URN: urn:nbn:se:hj:diva-71506DOI: 10.1080/09638288.2025.2455532ISI: 001407674300001PubMedID: 39873443Scopus ID: 2-s2.0-85216537455OAI: oai:DiVA.org:hj-71506DiVA, id: diva2:2063643
Projects
CHILD-PMH
Funder
Swedish Research Council, 2018-05824_VRAvailable from: 2026-05-29 Created: 2026-05-29 Last updated: 2026-05-29Bibliographically approved

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Ivarsson, MagnusDanielsson, Henrik

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