Evidence map›Paper›PMID 42786529›Full record

ArticleBMC psychology2026

Assessing Swedish genetic counselling outcome measures for autism and general use: Rasch findings highlight the need for improved measures.

Mattias Nordstrand, Samuelle Fajutrao Falk, Magnus Johansson, Rebecka Pestoff, Kristiina Tammimies

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Article in BMC psychology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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4 · The record

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5 · Who and what money

Authors and funding

5 authors.

Mattias Nordstrand *Center of Neurodevelopmental Disorders, Centre for Psychiatry Research, Department of Women's and Children's Health, Karolinska Institutet, Solna, Sweden.
Samuelle Fajutrao Falk *Center of Neurodevelopmental Disorders, Centre for Psychiatry Research, Department of Women's and Children's Health, Karolinska Institutet, Solna, Sweden.
Magnus JohanssonCentre for Psychiatry Research, Department of Clinical Neuroscience, Karolinska Institutet, Solna, Sweden.
Rebecka PestoffClinical Genetics Department, University Hospital Linköping, Linköping, Sweden.
Kristiina TammimiesCenter of Neurodevelopmental Disorders, Centre for Psychiatry Research, Department of Women's and Children's Health, Karolinska Institutet, Solna, Sweden. kristiina.tammimies@ki.se.ORCID http://orcid.org/0000-0002-8324-4697

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundGenetic counselling outcome measures are increasingly adapted for diverse clinical contexts. While the Genetic Counselling Outcome Scale (GCOS-24) is available in Swedish, no autism-specific version has been developed.

methodsWe adapted the Swedish GCOS-24 using the English version of the modified GCOS-24 (mGCOS-24) to create a Swedish autism-specific mGCOS-24. Thereafter, we evaluated both the Swedish autism mGCOS-24 and the Swedish general GCOS-24 using Rasch analysis to assess their psychometric properties.

resultsBoth instruments exhibited structural challenges, including multidimensionality, disordered thresholds, local item dependence, and invariance issues. For the Swedish autism mGCOS-24, we were able to identify subscales with acceptable measurement properties. However, applying the same structure to the Swedish general GCOS-24 did not resolve its broader limitations.

conclusionsThis study introduces the first Swedish autism‑specific mGCOS‑24 and represents the first Rasch‑based evaluation of any GCOS‑24 or mGCOS‑24 in Swedish. Our findings highlight important opportunities for outcome measure refinement but also indicate that new or more substantially adapted tools may be needed to capture outcomes of genetic counselling in autistic populations.

Indexed as

Autistic DisorderGenetic CounselingOutcome Assessment, Health CareAdolescentAdultChildFemaleHumansMalePsychometricsReproducibility of ResultsSwedenAutismGenetic counsellingPatient-reported outcome measuresPsychometricsRasch measurement theory

Identifiers

PMID42786529
PMCPMC13602552

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