title: Tools to Assess Pain or Lack of Comfort in Dementia: A Content Analysis.
abstract: BACKGROUND
  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.
  
  
  OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands; Department of General Practice & Elderly Care Medicine, VU University Medical Center, Amsterdam, The Netherlands. Electronic address: j.vandersteen@vumc.nl.
authors.forename: Jenny T
authors.initials: JT
authors.lastname: van der Steen
authors.affiliation: 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.
authors.forename: Elizabeth L
authors.initials: EL
authors.lastname: Sampson
authors.affiliation: End-of-Life Care Research Group, Vrije Universiteit Brussel and Ghent University, Belgium, Brussels, Belgium.
authors.forename: Lieve
authors.initials: L
authors.lastname: Van den Block
authors.affiliation: Division of Psychiatry, Marie Curie Palliative Care Research Department, University College London, London, United Kingdom.
authors.forename: Kathryn
authors.initials: K
authors.lastname: Lord
authors.affiliation: Faculty of Humanities and Third Faculty of Medicine, Charles University in Prague, Prague, Czech Republic.
authors.forename: Hana
authors.initials: H
authors.lastname: Vankova
authors.affiliation: Department of Community Medicine, Primary Care and Emergency Medicine, Geneva University Hospitals and University of Geneva, Geneva, Switzerland.
authors.forename: Sophie
authors.initials: S
authors.lastname: Pautex
authors.affiliation: End-of-Life Care Research Group, Vrije Universiteit Brussel and Ghent University, Belgium, Brussels, Belgium.
authors.forename: An
authors.initials: A
authors.lastname: Vandervoort
authors.affiliation: Department of Palliative Medicine, University Hospital Bonn, Bonn, Germany; Center for Palliative Care, Malteser Hospital Seliger Gerhard Bonn/Rhein-Sieg, Bonn, Germany.
authors.forename: Lukas
authors.initials: L
authors.lastname: Radbruch
authors.affiliation: 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.
authors.forename: Pesach
authors.initials: P
authors.lastname: Shvartzman
authors.affiliation: Lincolnshire Partnership Foundation Trust, Lincoln, Lincolnshire, United Kingdom.
authors.forename: Valentina
authors.initials: V
authors.lastname: Sacchi
authors.affiliation: 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.
authors.forename: Henrica C W
authors.initials: HC
authors.lastname: de Vet
authors.affiliation: Department of Geriatric Medicine, Ghent University Hospital, Ghent, Belgium.
authors.forename: Nele J A
authors.initials: NJ
authors.lastname: Van Den Noortgate
mesh_terms: D003704:Dementia / Q000175:diagnosis* / Q000503:physiopathology; D055317:Evidence-Based Practice / Q000379:methods; D006801:Humans; D010146:Pain / Q000175:diagnosis* / Q000503:physiopathology; D010147:Pain Measurement; D010166:Palliative Care / Q000379:methods; D011788:Quality of Life; D063189:Symptom Assessment / Q000379:methods*
keywords: Dementia; pain measurement; palliative care; quality of life; symptom assessment