An international road map to improve pain assessment in people with impaired cognition: the development of the Pain Assessment in Impaired Cognition (PAIC) meta-tool.
BACKGROUND
Pain is common in people with dementia, yet identification is challenging. A number of pain assessment tools exist, utilizing observation of pain-related behaviours, vocalizations and facial expressions. Whilst they have been developed robustly, these often lack sufficient evidence of psychometric properties, like reliability, face and construct validity, responsiveness and usability, and are not internationally implemented. The EU-COST initiative "Pain in impaired cognition, especially dementia" aims to combine the expertise of clinicians and researchers to address this important issue by building on previous research in the area, identifying existing pain assessment tools for dementia, and developing consensus for items for a new universal meta-tool for use in research and clinical settings. This paper reports on the initial phase of this collaboration task.


METHODS
All existing observational pain behaviour tools were identified and elements categorised using a three-step reduction process. Selection and refinement of items for the draft Pain Assessment in Impaired Cognition (PAIC) meta-tool was achieved through scrutiny of the evidence, consensus of expert opinion, frequency of use and alignment with the American Geriatric Society guidelines. The main aim of this process was to identify key items with potential empirical, rather than theoretical value to take forward for testing.


RESULTS
12 eligible assessment tools were identified, and pain items categorised according to behaviour, facial expression and vocalisation according to the AGS guidelines (Domains 1 - 3). This has been refined to create the PAIC meta-tool for validation and further refinement. A decision was made to create a supporting comprehensive toolkit to support the core assessment tool to provide additional resources for the assessment of overlapping symptoms in dementia, including AGS domains four to six, identification of specific types of pain and assessment of duration and location of pain.


CONCLUSIONS
This multidisciplinary, cross-cultural initiative has created a draft meta-tool for capturing pain behaviour to be used across languages and culture, based on the most promising items used in existing tools. The draft PAIC meta-tool will now be taken forward for evaluation according to COSMIN guidelines and the EU-COST protocol in order to exclude invalid items, refine included items and optimise the meta-tool.
Wolfson Centre for Age-Related Diseases, Kings College London, London, UK. anne.corbett@kcl.ac.uk.
Anne
A
Corbett
Department of Public Health and Primary care medicine, Leiden University Medical Center & EU COST Vice-Chair, Leiden, The Netherlands. w.p.achterberg@lumc.nl.
Wilco
W
Achterberg
Department of Global Public Health and Primary Care, Centre for Elderly and Nursing Home Medicine, University of Bergen, Bergen, Norway. Bettina.husebo@igs.uib.no.|Center for Age-Related Medicine, Stavanger University Hospital, Stavanger, Norway. Bettina.husebo@igs.uib.no.
Bettina
B
Husebo
Department of Orofacial Pain and Dysfunction, Academic Centre for Dentistry Amsterdam (ACTA), University of Amsterdam and VU University Amsterdam, Amsterdam, The Netherlands. F.lobbezoo@acta.nl.
Frank
F
Lobbezoo
Department of Epidemiology & Biostatistics, EMGO Institute for Health and Care Research, VU University medical center, Amsterdam, The Netherlands. Hcw.devet@vumc.nl.
Henrica
H
de Vet
Department of Physiological Psychology, University of Bamberg, Bamberg, Germany. Miriam.kunz@uni-bamberg.de.
Miriam
M
Kunz
Department of Global Public Health and Primary Care, Physiotherapy Research Group, University of Bergen, Bergen, Norway. liv.strand@igs.uib.no.
Liv
L
Strand
Social Sciences Department & Center for Cognitive and Behavioral Psychology (CCBP), University of Nicosia, Nicosia, Cyprus. Constantinou.m@unic.ac.cy.
Marios
M
Constantinou
Department of Neurology, Neurosurgery and Psychiatry, University of Medicine and Pharmacy "Carol Davila", Bucharest, Romania. catalina.tudose52@gmail.com.
Catalina
C
Tudose
Department of Clinical Psychology, University of Giessen, Giessen, Germany. judith.kappesser@psychol.uni-giessen.de.
Judith
J
Kappesser
Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands. m.w.m.de_waal@lumc.nl.
Margot
M
de Waal
Department of Physiological Psychology, University of Bamberg, Bamberg, Germany. stefan.lautenbacher@uni-bamberg.de.
Stefan
S
Lautenbacher
D001519:Behavior; D003071:Cognition / Q000502:physiology; D003072:Cognition Disorders / Q000150:complications*; D032921:Consensus; D003704:Dementia / Q000150:complications*; D005149:Facial Expression; D006801:Humans; D007398:Interpersonal Relations; D009043:Motor Activity / Q000502:physiology; D009068:Movement; D009633:Nonverbal Communication; D010146:Pain / Q000503:physiopathology / Q000523:psychology; D010147:Pain Measurement / Q000379:methods* / Q000706:statistics & numerical data; D011594:Psychometrics / Q000706:statistics & numerical data; D015203:Reproducibility of Results; D014705:Verbal Behavior; D014831:Voice / Q000502:physiology