Evidence map›Paper›PMID 41920472›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2026

From QI-disability to QID-12: creating a brief proxy-report measure of quality of life for children with intellectual disability.

Melissa K Licari, Andrew J O Whitehouse, Natasha N Ludwig, Mary Wojnaroski, Rebecca Hommer, Gabrielle Conecker, JayEtta Hecker, Kelly Muzyczka, Helen Leonard, Katrina J Williams and 3 more

Abstract readValidation Study
In one paragraph

Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

13 authors.

Melissa K LicariThe Kids Research Institute Australia, Centre for Child Health Research, The University of Western Australia, PO Box 855, West Perth, Perth, WA, 6872, Australia.ORCID http://orcid.org/0000-0003-3705-5323
Andrew J O WhitehouseThe Kids Research Institute Australia, Centre for Child Health Research, The University of Western Australia, PO Box 855, West Perth, Perth, WA, 6872, Australia.ORCID http://orcid.org/0000-0001-8722-1575
Natasha N LudwigKennedy Krieger Institute, Center for Neuropsychological and Psychological Assessment/Psychiatry and Behavioral Sciences, Johns Hopkins School of Medicine, Baltimore, MD, USA.ORCID http://orcid.org/0000-0002-8934-7267
Mary WojnaroskiDepartment of Psychology/Psychiatry and Behavioral Health, Nationwide Children's Hospital, Ohio State University, Columbus, OH, USA.ORCID http://orcid.org/0009-0006-5595-0419
Rebecca HommerMaryland & DC DeafBlind Project, Connections Beyond Sight and Sound, College Park, MD, USA.ORCID http://orcid.org/0009-0005-4800-6182
Gabrielle ConeckerThe Inchstone Project, Decoding Developmental Epilepsies, Washington, DC, USA.ORCID http://orcid.org/0000-0003-3274-0292
JayEtta HeckerThe Inchstone Project, Decoding Developmental Epilepsies, Washington, DC, USA.ORCID http://orcid.org/0009-0001-2704-5044
Kelly MuzyczkaThe Inchstone Project, Decoding Developmental Epilepsies, Washington, DC, USA.ORCID http://orcid.org/0000-0001-5307-0692
Helen LeonardThe Kids Research Institute Australia, Centre for Child Health Research, The University of Western Australia, PO Box 855, West Perth, Perth, WA, 6872, Australia.ORCID http://orcid.org/0000-0001-6405-5834
Katrina J WilliamsClinical Sciences, Monash University, Melbourne, Australia.ORCID http://orcid.org/0000-0002-1686-4458
Dinah S ReddihoughNeurodisability and Rehabilitation, Murdoch Children's Research Institute, Melbourne, Australia.ORCID http://orcid.org/0000-0003-3634-7906
Jenny DownsThe Kids Research Institute Australia, Centre for Child Health Research, The University of Western Australia, PO Box 855, West Perth, Perth, WA, 6872, Australia. Jenny.Downs@thekids.org.au.ORCID http://orcid.org/0000-0001-7358-9037
Peter JacobyThe Kids Research Institute Australia, Centre for Child Health Research, The University of Western Australia, PO Box 855, West Perth, Perth, WA, 6872, Australia.ORCID http://orcid.org/0000-0001-5092-7697

Funding

Measuring Responsivity in Individuals with Profound Intellectual DisabilityK23HD115865 · NICHD · HUGO W. MOSER RES INST KENNEDY KRIEGER · PI Natasha Ludwig · 2024 to 2026
$511k
NICHD NIH HHS K23 HD115865
6 · The paper itself

Abstract

purposeQuality of Life Disability (QI-Disability) is a 32-item parent-report measure assessing quality of life (QOL) in children with intellectual disability across domains of physical health, positive emotions, negative emotions, social interactions, leisure and outdoors, and independence. This study aimed to develop and validate a short form for use in clinical and research settings.

methodsCaregivers of 1,699 children with intellectual disability aged 3–18 years and representing mild to profound functional impairments, completed the QI-Disability measure as part of different studies. A Genetic Algorithm (GA) was applied to select a reduced item set. The short form was evaluated against the original scale using correlational, reliability, and Rasch analyses.

resultsThe GA-derived 12-item set (QID-12) represented each of the six QOL domains. Correlation between QID-12 and QI-Disability total scores was high (r = 0.97). Internal consistency of QID-12 was acceptable (α = 0.85). Rasch analysis demonstrated good fit of all items to the partial credit model, person separation reliability was 0.84, and there was no evidence of multidimensionality (p > 0.99). Item targeting was appropriate across the ability spectrum. Disordered category thresholds were observed for three items, but overall psychometric performance remained satisfactory.

conclusionQID-12 provides a valid and reliable short form of the QI-Disability. It retains coverage of the key domains of child QOL while substantially reducing respondent burden, supporting its use in both clinical practice and population research.

Indexed as

Children with DisabilitiesIntellectual DisabilityQuality of LifeAdolescentCaregiversChildChild, PreschoolFemaleHumansMaleParentsProxyPsychometricsReproducibility of ResultsSurveys and QuestionnairesChildrenIntellectual disabilityMeasurementQuality of lifeShort-form

Identifiers

PMID41920472
PMCPMC13043590

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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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.