Abstract
PURPOSE: Detecting pain in older people with dementia is challenging. Consequentially, pain is often under-reported and under-treated. There remains uncertainty over what measures should be promoted for use to assess pain in this population. The purpose of this paper is to answer this question. METHODS: A search of clinical trials registered on the ClinicalTrial.gov and ISRCTN registries was performed to identify outcome measures used to assess pain in people with dementia. Following this, a systematic review of published and unpublished databases was performed to 01 November 2021 to identify papers assessing the psychometric properties of these identified measures. Each paper and measure was assessed against the COSMIN checklist. A best evidence synthesis analysis was performed to assess the level of evidence for each measure. RESULTS: From 188 clinical trials, nine outcome measures were identified. These included: Abbey Pain Scale, ALGOPLUS, DOLOPLUS-2, Facial Action Coding System, MOBID-2, self-reported pain through the NRS or VAS/thermometer or Philadelphia Geriatric Pain Intensity Scale, PACSLAC/PACSLAC-2, Pain Assessment in Advanced Dementia (PAINAD), and Checklist for non-verbal pain behavior (CNPI). From these, 51 papers (5924 people with dementia) were identified assessing the psychometric properties of these measures. From these, there was strong- and moderate-level evidence to support the use of the facial action coding system, PACSLAC and PACSLAC-II, CNPI, DOLOPLUS-2, ALGOPLUS, MOBID, and MOBID-2 tools for the assessment of pain with people living with dementia. CONCLUSION: Whilst these reflect measurement tools used in research, further consideration on how these reflect clinical practice should be considered. PROSPERO REGISTRATION: CRD42021282032.