ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2019
Psychometric properties of the Quality of Life Inventory-Disability (QI-Disability) measure.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 51 papers, 1 of them a synthesis that pooled it.
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Who cites it
51 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Parent-reported outcome measures evaluating communication in individuals with rare neurodevelopmental disorders: A systematic review.International journal of language & communication disordersPooled it
- A phase 3, randomized clinical trial of soticlestat as adjunctive therapy for Lennox-Gastaut syndrome.Epilepsia · 2026Trial
- Soticlestat as an adjunctive therapy in children and young adults with Dravet syndrome.Epilepsia · 2026Trial
- Effects of ganaxolone on non-seizure outcomes in CDKL5 Deficiency Disorder: Double-blind placebo-controlled randomized trial.European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society · 2024Trial
- A prospective natural history study protocol for clinical trial readiness in synaptic disorders.Epilepsia · 2026Article
- Comprehensive Psychometric Evaluation of the Child/Adult and Family Quality of Life Scale : Third Edition.Journal of autism and developmental disorders · 2026Article
- The Impact of 40 Years of Data Collection: The Victoria Cerebral Palsy Register.Children (Basel, Switzerland) · 2026Article
- From QI-disability to QID-12: creating a brief proxy-report measure of quality of life for children with intellectual disability.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Real-world benefits and tolerability of trofinetide for the treatment of Rett syndrome: The LOTUS study.Developmental medicine and child neurology · 2026Article
- Quality of life surveys developed or validated in children or youth with special healthcare needs: a scoping review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- NNZ-2591 in Children and Adolescents With Phelan-McDermid Syndrome: Single-Group, Open-Label, Phase 2 Trial Results.Neurology. Genetics · 2026Article
- Caregiver-reported quality of life in individuals with developmental and epileptic encephalopathy and other severe neurodevelopmental encephalopathies.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Beyond benchmarks: a narrative review of evolving quality of life frameworks for children with neurodevelopmental and learning disabilities and the need for integrated digital twin approaches.Frontiers in public health · 2026Review
- Parent and caregiver report questionnaires for children and adolescents with intellectual disabilities: a systematic review.International journal of developmental disabilities · 2026Review
- Defining and measuring emotional well-being in intellectual and developmental disabilities: A scoping review.Research in developmental disabilities · 2025Article
- Medical Biases and Misconceptions Impact Diagnoses in Males With Loss of Function MECP2 Variants.American journal of medical genetics. Part A · 2025Article
- Caregivers' Perceptions of Clinical Symptoms, Disease Management, and Quality of Life Impact in Cases of Cyclin-Dependent Kinase-Like 5 Deficiency Disorder: Cross-Sectional Online Survey.JMIR formative research · 2025Article
- A Critical Appraisal of the Measurement of Adaptive Social Communication Behaviors in the Behavioral Intervention Context.Behavioral sciences (Basel, Switzerland) · 2025Review
- Psychometric evaluation of the Persian version of the Family Caregiver-Specific Quality of Life Scale (FAMQOL) among family caregivers of patients with chronic psychiatric disorders.BMC psychology · 2025Article
- Challenges in Using Parent-Reported Bed and Wake Times for Actigraphy Scoring in Rett-Related Syndromes.American journal on intellectual and developmental disabilities · 2025Article
Corrections and comments
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Authors and funding
9 authors.
Funding
Abstract
purposeChildren with intellectual disability encounter daily challenges beyond those captured in current quality of life measures. This study evaluated a new parent-report measure for children with intellectual disability, the Quality of Life Inventory-Disability (QI-Disability).
methodsQI-Disability was administered to 253 primary caregivers of children (aged 5-18 years) with intellectual disability across four diagnostic groups: Rett syndrome, Down syndrome, cerebral palsy or autism spectrum disorder. Exploratory and confirmatory factor analyses were conducted and goodness of fit of the factor structure assessed. Associations between QI-Disability scores, and diagnostic and age groups were examined with linear regression.
resultsSix domains were identified: physical health, positive emotions, negative emotions, social interaction, leisure and the outdoors, and independence. Goodness-of-fit statistics were satisfactory and similar for the whole sample and when the sample was split by ability to walk or talk. On 100 point scales and compared to Rett syndrome, children with Down syndrome had higher leisure and the outdoors (coefficient 10.6, 95% CI 3.4,17.8) and independence (coefficient 29.7, 95% CI 22.9, 36.5) scores, whereas children with autism spectrum disorder had lower social interaction scores (coefficient - 12.8, 95% CI - 19.3, - 6.4). Scores for positive emotions (coefficient - 6.1, 95% CI - 10.7, - 1.6) and leisure and the outdoors (coefficient 5.4, 95% CI - 10.6, - 0.1) were lower for adolescents compared with children.
conclusionsInitial evaluation suggests that QI-Disability is a reliable and valid measure of quality of life across the spectrum of intellectual disability. It has the potential to allow clearer identification of support needs and measure responsiveness to interventions.
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Registered trials
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.