Abstract

Observational pain scales can help to identify pain in persons with dementia who may have difficulty expressing pain verbally. The Pain Assessment in Impaired Cognition-15 (PAIC15) covers 15 items that indicate pain, but it is unclear how probable pain is, for each summed score (range 0–45). We aimed to determine sensitivity and specificity of cut-offs for probable pain on the PAIC15 against three standards: (1) self-report when able, (2) the established Pain Assessment in Advanced Dementia (PAINAD) cut-off of 2, and (3) observer’s overall estimate based on a series of systematic observations. We used data of 238 nursing home residents with dementia who were observed by their physician in training or nursing staff in the context of an evidence-based medicine (EBM) training study, with re-assessment after 2 months in 137 residents. The area under the ROC curve was excellent against the PAINAD cut-off (≥0.8) but acceptable or less than acceptable for the other two standards. Across standards and criteria for optimal sensitivity and specificity, PAIC15 scores of 3 and higher represent possible pain for screening in practice, with sensitivity and specificity against self-report in the 0.5 to 0.7 range. While sensitivity for screening in practice may be too low, a cut-off of 4 is reasonable to indicate probable pain in research.

Highlights

  • Due to frequent co-morbid conditions that involve pain, pain is highly prevalent in persons with dementia and with other diseases that cause cognitive impairment or difficulty expressing pain, such as intellectual disability [1,2,3,4]

  • We report demographics, type of dementia, dementia stage with the Global Deterioration Scale (GDS) [32] and the Bedford Alzheimer Nursing Severity-Scale (BANS-S) [35,36], full ADL dependency with BANS-S items, any acute disease at the time of the assessment, and presence of comorbid disease that may be related to pain from the categories of the Functional Comorbidity Index (FCI) [37,38]

  • For about one-third, the dementia was in a severe stage, consistent with less than half being fully dependent in the main ADL functions

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Summary

Introduction

Due to frequent co-morbid conditions that involve pain, pain is highly prevalent in persons with dementia and with other diseases that cause cognitive impairment or difficulty expressing pain, such as intellectual disability [1,2,3,4]. Various dementia types may differently affect the way pain is being perceived (threshold and intensity), processed, and communicated, but typically about half of persons with dementia are in pain [1,5,6]. Pain may be communicated non-verbally in manners that others may not always understand, for example, expressed as agitation. Better pain management in the context of a pain or needs assessment can effectively address challenging behavior [7,8]. Longitudinal studies found associations between pain and challenging behavior to be weak with diverting patterns towards the end of life (increased pain, in particular at rest, whereas 4.0/). Agitation decreased, e.g., [9,10]) These studies point to a need for cautious, evidence-based interpretation of possible behavioral indicators of pain

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