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 Scale-Dementia Alzheimer Type [DS-DAT], Disability Distress Assessment Tool [DisDAT], End-of-Life in Dementia-Comfort 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.

Department of Community Medicine Primary Care and Emergency Medicine Geneva University Hospitals and University of Geneva Geneva Switzerland

Department of Geriatric Medicine Ghent University Hospital Ghent Belgium

Department of Palliative Medicine University Hospital Bonn Bonn Germany; Center for Palliative Care Malteser Hospital Seliger Gerhard Bonn Rhein Sieg Bonn Germany

Division of Psychiatry Marie Curie Palliative Care Research Department University College London London United Kingdom

Division of Psychiatry Marie Curie Palliative Care Research Department University College London London United Kingdom; Barnet Enfield and Haringey Mental Health Trust Liaison Team North Middlesex University Hospital London United Kingdom

EMGO Institute for Health and Care Research VU University Medical Center Amsterdam The Netherlands; Department of Epidemiology and Biostatistics VU University Medical Center Amsterdam The Netherlands

EMGO Institute for Health and Care Research VU University Medical Center Amsterdam The Netherlands; Department of General Practice and Elderly Care Medicine VU University Medical Center Amsterdam The Netherlands

End of Life Care Research Group Vrije Universiteit Brussel and Ghent University Belgium Brussels Belgium

Faculty of Humanities and 3rd Faculty of Medicine Charles University Prague Prague Czech Republic

Lincolnshire Partnership Foundation Trust Lincoln Lincolnshire United Kingdom

Pain and Palliative Medicine Unit Division of Community Health Department of Family Medicine Siaal Research Center for Family Medicine and Primary Care Faculty of Health Sciences Ben Gurion University of the Negev Beer Sheva Israel

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