ArticleJournal of applied research in intellectual disabilities : JARID2022
Proxy-report in individuals with intellectual disability: A scoping review.
Article in Journal of applied research in intellectual disabilities : JARID, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04631237 (Developing a Down Syndrome Health Instrument), which is not on this map. Cited by 25 papers, 3 of them syntheses that pooled 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.
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.
Developing a Down Syndrome Health Instrument
Who cites it
25 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Pooled it
- Studying the Experiences of Children With Moderate to Profound Intellectual Disabilities in Research: A Systematic Review.Journal of intellectual disability research : JIDR · 2026Pooled it
- Instruments in Spanish to Assess the Mental Health of Adults With Intellectual Disabilities. A Systematic Review.Journal of applied research in intellectual disabilities : JARID · 2025Pooled it
- Assessment of Posttraumatic Stress Disorder in Adults With Severe or Moderate Intellectual Disability Using the Diagnostic Interview Trauma and Stressors-Severe Intellectual Disability.Journal of intellectual disability research : JIDR · 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
- Caregiver Interviews Regarding Health in Down Syndrome.American journal of medical genetics. Part A · 2026Observational
- Adapting Measures of Anxiety and Mood Disorders for Use with Autistic Adults: A Systematic Review.Current developmental disorders reports · 2026Review
- Patient-centered burdens and economic outcomes among patients who are veterans, people with intellectual and developmental disabilities, and people living in rural areas and their caregivers: a scoping review.Frontiers in public health · 2026Article
- Defining and measuring emotional well-being in intellectual and developmental disabilities: A scoping review.Research in developmental disabilities · 2025Article
- The relative importance of key life domains for people with disability: findings from a cross-sectional survey of NDIS participants in Australia.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Article
- Proxy reporting in health: a scoping review of instructions, perspectives, and reporting experiences.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Developing a Measure of Key Adult Outcomes in Adults with Developmental Disabilities: Conceptual Model and Item Generation of the REALS (Relationships, Employment, Autonomy, and Life Satisfaction).Journal of autism and developmental disorders · 2025Article
- A Systematic Review of Community-Based Exercise Interventions for Adults with Intellectual Disabilities.Healthcare (Basel, Switzerland) · 2025Review
- Agreement between patient- and proxy-reported outcome measures in adult musculoskeletal trauma and injury: a scoping review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Stress, Anxiety and Coping in Adults With Down Syndrome: An Exploratory Co-Research Study.Journal of applied research in intellectual disabilities : JARID · 2025Article
- Daily functioning and (health-related) quality of life of young adult survivors of childhood bacterial meningitis.European journal of pediatrics · 2024Article
- Health support of people with intellectual disability and the crucial role of support workers.BMC health services research · 2024Article
- Commentary: Determining Economic Factors That Matter to People With Intellectual and Developmental Disabilities and Their Caregivers: A Process Framework.Medical care · 2023Article
- Views on the impact of the COVID-19 pandemic on health in people with Down syndrome from diverse backgrounds.American journal of medical genetics. Part A · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
Abstract
backgroundViews can be collected from individuals (self-report) or others on their behalf (proxy-report).
objectiveWe aimed to review the literature on methods and statistical approaches used to evaluate observer versus self-report responses from individuals with intellectual disability or Down syndrome.
methodsA series of key questions related to statistical approaches and data collection methods were formulated a priori to inform the search strategy and review process. These addressed the topics of self-report in individuals with intellectual disability, including Down syndrome. Using the National Library of Medicine database, PubMed, detailed literature searches were performed. The quality of available evidence was then evaluated, the existing literature was summarised, and knowledge gaps and research needs were identified.
resultsFifty relevant original articles were identified which addressed at least one key question. Study details, including: research design, internal validity, external validity, and relevant results are presented. Review of studies of individuals with intellectual disability which used a variety of statistical approaches showed mixed agreement between self-report and proxy-report.
conclusionFew studies identified to-date have used self-report from individuals with Down syndrome, but lessons from the existing intellectual disability literature can guide researchers to incorporate self-report from individuals with Down syndrome in the future.
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What OpenQuestion holds
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.