ArticleBMC medical research methodology2018
Self-reported measures in health research for people with intellectual disabilities: an inclusive pilot study on suitability and reliability.
Article in BMC medical research methodology, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.
What it found
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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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
10 citing papers in PubMed, 1 synthesis or guideline pooled it, 30 citations in OpenAlex.
- Pooled it
- Parent and caregiver report questionnaires for children and adolescents with intellectual disabilities: a systematic review.International journal of developmental disabilities · 2026Review
- Engaging underrepresented populations in public health monitoring: strategies for people with mild intellectual disability or low literacy skills.International journal for equity in health · 2025Article
- Psychometric properties of the Pediatric Evaluation of Disability Inventory - Patient Reported Outcome: A cognitively accessible measure of functional performance.Developmental medicine and child neurology · 2025Article
- The mental-health patient-activation measure: assessing validity, reliability, and responsiveness in outpatient settings.BMC psychiatry · 2025Article
- Sustainable Employability of People with Limited Capability for Work: The Participatory Development and Validation of a Questionnaire.Journal of occupational rehabilitation · 2025Article
- Quantifying Physical Activity and Sedentary Behavior in Adults with Intellectual Disability: A Scoping Review of Assessment Methodologies.Healthcare (Basel, Switzerland) · 2024Article
- Proxy-report in individuals with intellectual disability: A scoping review.Journal of applied research in intellectual disabilities : JARID · 2022Article
- Self-Report Stress Measures to Assess Stress in Adults With Mild Intellectual Disabilities-A Scoping Review.Frontiers in psychology · 2021Article
- Health and economic scarcity: Measuring scarcity through consumption, income and home ownership indicators in Norway.SSM - population health · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe lack of suitable and reliable scales to measure self-reported health and health behaviour among people with intellectual disabilities (ID) is an important methodological challenge in health research. This study, which was undertaken together with co-researchers with ID, explores possibilities for self-reported health scales by adjusting, testing, and reflecting on three self-reported health scales.
methodsIn an inclusive process, the researchers and co-researchers with ID adjusted the SBQ (sedentary behaviour), SQUASH (physical activity), and SRH (self-reported health) scales, after which a test-retest study among adults with ID was performed. Test outcomes were analysed on suitability and test-retest reliability, and discussed with the co-researchers with ID to reflect on outcomes and to make further recommendations.
resultsMain adjustments made to the scales included: use easy words, short sentences, and easy answer formats. Suitability (N = 40) and test-retest reliability (N = 15) was higher for the adjusted SQUASH (SQUASH-ID), in which less precise time-based judgements are sought, than in the adjusted SBQ (SBQ-ID). Suitability and test-retest reliability were fair to moderate for the SRH-ID and CHS-ID. The main outcome from the reflection was the recommendation to use SQUASH-ID answer options, in which less precise time-based judgements were sought, in the SBQ-ID as well.
conclusionsThis study served as a pilot of an inclusive process in which people with ID collaborated in adjusting, testing, and reflecting on self-reported health scales. Although the adjusted self-reported measurements may be reliable and suitable to the target group, the adjustments needed may impair measurement precision. This study's results contribute to informed decision making on the adaptation and use of self-reported health scales for people with ID.
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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.