Self-Report Measurement Techniques in Intellectual and Developmental Disabilities

Self-report measurement techniques have emerged as crucial tools for assessing subjective experiences, behaviours and quality of life in individuals with intellectual and developmental disabilities (IDD). Historically, reliance on proxy reports and clinician assessments risked overlooking first-person perspectives. Recent advances focus on adapting instruments to accommodate cognitive, linguistic and sensory needs, thereby ensuring the validity and reliability of self-reported data among people with mild to moderate IDD. Inclusive research approaches have engaged co-researchers with IDD in the design, piloting and refinement of scales, yielding clear instructions, simplified language and accessible response formats. These efforts address challenges such as impaired recall, abstract reasoning and social desirability bias, and demonstrate that with appropriate adjustments many individuals with IDD can reliably communicate their own health status, emotional experiences and satisfaction with services. This shift towards person-centred measurement has broad implications for clinical practice, policy evaluation and the tailoring of interventions to support autonomy, well-being and social inclusion on a global scale.

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Self-Report Measurement Techniques in Intellectual and Developmental Disabilities publication trend

The graph below shows the total number of articles in self-report measurement techniques in intellectual and developmental disabilities across all publications each year (not limited to Nature Index journals).

Technical terms

Self-report measure: An instrument that elicits information directly from the individual about their own experiences, feelings or behaviours.

Cognitive accessibility: The extent to which the design and language of a measure accommodate the cognitive abilities and comprehension needs of respondents.

Content validity: The degree to which an instrument’s items comprehensively represent the construct it aims to measure, as judged by target users and experts.

Psychometric properties: Quantitative characteristics of a measure, such as reliability and validity, that determine its measurement quality.

Proxy report: Data provided by a caregiver or informant on behalf of an individual who may face challenges in self-reporting.

References

1. Self-reported measures in health research for people with intellectual disabilities: an inclusive pilot study on suitability and reliability. BMC Medical Research Methodology (2018).
2. Self-Report Stress Measures to Assess Stress in Adults With Mild Intellectual Disabilities—A Scoping Review. Frontiers in Psychology (2021).
3. Does adapting a self-report instrument to improve its cognitive accessibility for people with intellectual disability result in a better measure? − A cognitive interview study. Research in Developmental Disabilities (2024).
4. Development and content validity of the Person Experiences Interview Survey (PEIS): a measure of the mental health services experiences of people with developmental disabilities. Frontiers in Psychiatry (2023).