Rating scales to measure adverse effects of medications in people with intellectual disability: a scoping review

PURPOSE: Intellectual disability (ID) is a chronic neurodevelopmental condition characterised by limitations in intelligence and adaptive skills with an onset prior to the age of 18 years. People with ID have complex healthcare needs and are more likely than the general population to experience multiple comorbidities and polypharmacy, with subsequent increased risk of adverse medication effects. The aim of this scoping review is to characterise rating scales used to measure adverse effects of medication in people with ID. METHODS: Four online databases (PsycINFO, Medline, Web of Science and OpenGrey) were searched in April 2020. Studies were assessed for inclusion against pre-specified eligibility criteria. Reference lists of included studies were hand searched. Data extraction was carried out by two independent reviewers and key findings were tabulated for consideration. Studies were assessed for quality using the Mixed Methods Appraisal Tool. RESULTS: The search resulted in 512 unique records, of which fifteen met the inclusion criteria. Fourteen scales were identified. All scales assessed adverse effects of psychotropics only. Of the scales, only one, the Matson Evaluation of Drug Side Effects, which focuses on psychotropic medications, was originally developed for use in a population with ID. CONCLUSION: The Matson Evaluation of Drug Side Effects scale appears to be the most reliable and well-researched scale in people with ID. However, a scale which measures adverse effects across multiple medication classes would be valuable for use in this population. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00228-022-03375-2.