There is no protocol for adapting quantitative sensory tests (QSTs) for individuals with disabilities. Some alternatives are to use measures that increase communication ability or do not require self reports.

Alternative Approaches to Measuring Pain in Individuals with Severe Intellectual Disability

While this population may present their symptoms of pain atypically, there is little reason to question or doubt that these individuals experience and express pain. Even if their pain is not acknowledged, they are still in need of pain treatment and management.

The Case of Untreated Pain in Intellectually Disabled Persons

It is difficult to obtain a sufficient sample size when conducting research focused on individuals with IDD. This is due to the multiple causes of IDD, comorbidities, and comedication.


Lack of Sufficient Sample Size in IDD Research


Most of the research we have on pain and intellectual disability involves those with a mild to moderate disability, with very little research involving those with severe intellectual disability. 

Cedarville University

Systematic exclusion of individuals with severe intellectual disability from research contributes to health inequalities. It also places them at as disadvantage by preventing them from receiving the potential benefits that may result from research. Many parents and caregivers have advocated for research on behalf of their children.

Exclusion of Individuals with Severe Intellectual Disability from Research

Raskoff, S. Z., Thurm, A., Miguel, H. O., Kim, S. Y. H., & Quezado, Z. M. N. (2023). Pain research and children and adolescents with severe intellectual disability: ethical challenges and imperatives. The Lancet. Child & adolescent health, 7(4), 288–296. https://doi.org/10.1016/S2352-4642(22)00346-7

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