Tools to Assess Pain or Lack of Comfort In Dementia: A Content Analysis
van der Steen, J.T. Sampson, E.L. Van den Block, L. Lord, Kathryn Vankova, H. Sophie, P. Vandervoort, A. Radbruch, L. Shvartzman, P. Sacchi, V.
van der Steen, J.T.
Sampson, E.L.
Van den Block, L.
Lord, Kathryn
Vankova, H.
Sophie, P.
Vandervoort, A.
Radbruch, L.
Shvartzman, P.
Sacchi, V.
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2015-11
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Abstract
Context. There is need for tools to help detect pain or lack of comfort in persons unable to communicate. However, pain
and (dis)comfort tools have not been compared, and it is unclear to what extent they discriminate between pain and other
possible sources of discomfort, or even if items differ.
Objectives. To map and compare items in tools that assess pain and the broader notion of discomfort or comfort in people
with severe dementia or at the end of life.
Methods. Using qualitative content analysis with six classifications, we categorized each item of four thoroughly tested
observational pain tools (Pain Assessment in Advanced Dementia [PAINAD], Pain Assessment Checklist for Seniors with Limited
Ability to Communicate [PACSLAC], Doloplus-2, and draft Pain Assessment in Impaired Cognition [PAIC]), and four
discomfort tools (including distress, comfort, and quality of life in severe dementia or at the end of life; Discomfort
ScaleeDementia Alzheimer Type [DS-DAT], Disability Distress Assessment Tool [DisDAT], End-of-Life in DementiaeComfort
Assessment in Dying with Dementia [EOLD-CAD], and Quality of Life in Late-Stage Dementia [QUALID] scale). We calculated
median proportions to compare distributions of categories of pain and discomfort tools.
Results. We found that, despite variable content across tools, items from pain and discomfort tools overlapped
considerably. For example, positive elements such as smiling and spiritual items were more often included in discomfort tools
but were not unique to these. Pain tools comprised more ‘‘mostly descriptive’’ (median 0.63 vs. 0.44) and fewer ‘‘highly
subjective’’ items (0.06 vs. 0.18); some used time inconsistently, mixing present and past observations.
Conclusion. This analysis may inform a more rigorous theoretical underpinning and (re)development of pain and
discomfort tools and calls for empirical testing of a broad item pool for sensitivity and specificity in detecting and
discriminating pain from other sources of discomfort.
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van der Steen JT, Sampson EL, Block LV et al (2015) Tools to Assess Pain or Lack of Comfort In Dementia: A Content Analysis. Journal of Pain and Symptom Management. 50(5): 659-675. e3.
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