Observational pain assessment in older persons with dementia in four countries: Observer agreement of items and factor structure of the Pain Assessment in Impaired Cognition.

BACKGROUND: Recognition of pain in people with dementia is challenging. Observational scales have been developed, but there is a need to harmonize and improve the assessment process. In EU initiative COST-Action TD1005, 36 promising items were selected from existing scales to be tested further. We aimed to study the observer agreement of each item, and to analyse the factor structure of the complete set. METHODS: One hundred and ninety older persons with dementia were recruited in four different countries (Italy, Serbia, Spain and The Netherlands) from different types of healthcare facilities. Patients represented a convenience sample, with no pre-selection on presence of (suspected) pain. The Pain Assessment in Impaired Cognition (PAIC, research version) item pool includes facial expressions of pain (15 items), body movements (10 items) and vocalizations (11 items). Participants were observed by health professionals in two situations, at rest and during movement. Intrarater and interrater reliability was analysed by percentage agreement. The factor structure was examined with principal component analysis with orthogonal rotation. RESULTS: Health professionals performed observations in 40-57 patients in each country. Intrarater and interrater agreement was generally high (≥70%). However, for some facial expression items, agreement was sometimes below 70%. Factor analyses showed a six-component solution, which were named as follows: Vocal pain expression, Face anatomical descriptors, Protective body movements, Vocal defence, Tension and Lack of affect. CONCLUSIONS: Observation of PAIC items can be done reliably in healthcare settings. Observer agreement is quite promising already without extensive training. SIGNIFICANCE: In this international project, promising items from existing observational pain scales were identified and evaluated regarding their reliability as an alternative to pain self-report in people with dementia. Analysis on factor structure helped to understand the character of the items. Health professionals from four countries using four different European languages were able to rate items reliably. The results contributed to an informed reduction of items for a clinical observer scale (Pain Assessment in Impaired Cognition scale with 15 items: PAIC15).

The Pain Assessment in Impaired Cognition scale (PAIC15): A multidisciplinary and international approach to develop and test a meta-tool for pain assessment in impaired cognition, especially dementia.

BACKGROUND: Over the last decades, a considerable number of observational scales have been developed to assess pain in persons with dementia. The time seems ripe now to build on the knowledge and expertize implemented in these scales to form an improved, "best-of" meta-tool. The EU-COST initiative "Pain in impaired cognition, especially dementia" aimed to do this by selecting items out of existing observational scales and critically re-assessing their suitability to detect pain in dementia. This paper reports on the final phase of this collaborative task. METHODS: Items from existing observational pain scales were tested for "frequency of occurrence (item difficulty)," "reliability" and "validity." This psychometric testing was carried out in eight countries, in different healthcare settings, and included clinical as well as experimental pain conditions. RESULTS: Across all studies, 587 persons with dementia, 27 individuals with intellectual disability, 12 Huntington's disease patients and 59 cognitively healthy controls were observed during rest and movement situations or while receiving experimental pressure pain, respectively. The psychometric outcomes for each item across the different studies were evaluated within an international and multidisciplinary team of experts and led a final selection of 15 items (5x facial expressions, 5x body movements, 5x vocalizations). CONCLUSIONS: The final list of 15 observational items have demonstrated psychometric quality and clinical usefulness both in their former scales and in the present international evaluation; accordingly, they qualified twice to form a new internationally agreed-on meta-tool for Pain Assessment in Impaired Cognition, the PAIC-15 scale. SIGNIFICANCE: Using a meta-tool approach by building on previous observational pain assessment scales and putting the items of these scales through rigorous empirical testing (using experimental as well as clinical pain studies in several European countries), we were able to identify the best items for pain assessment in individuals with impaired cognition. These selected items form the novel PAIC15 scale (pain assessment in impaired cognition, 15 items).

Pain assessment in impaired cognition: observer agreement in a long-term care setting in patients with dementia.

Aim: To study the application of the meta-tool Pain Assessment in Impaired Cognition (PAIC) in a clinical setting in patients with moderate to severe dementia. Materials & methods: Observational study in five Dutch nursing homes, where residents were observed by nurses or nurse-assistants during rest and movement. Prevalence and observer agreement of individual items were examined. Results: An observer agreement of ≥70% was found for most items of the body movement domain and vocalization domain, although prevalence of these behaviors was low (especially during rest). Items of the facial expression domain had a percentage agreement <70%, especially during movement, but with high prevalence of behaviors. Conclusion: The pain assessment in impaired cognition items show promising interobserver and intraobserver agreement in a clinical setting.

Pain Assessment in Impaired Cognition (PAIC): content validity of the Dutch version of a new and universal tool to measure pain in dementia.

OBJECTIVES: Detection and measurement of pain in persons with dementia by using observational pain measurement tools is essential. However, the evidence for the psychometric properties of existing observational tools remains limited. Therefore, a new meta-tool has been developed: Pain Assessment in Impaired Cognition (PAIC), as a collaborative EU action. The aim is to describe the translation procedure and content validity of the Dutch version of the PAIC. METHODS: Translation of the PAIC into Dutch followed the forward-backward approach of the Guidelines for Establishing Cultural Equivalence of Instruments. A questionnaire survey was administered to clinical nursing home experts (20 physicians and 20 nurses) to determine whether the PAIC items are indicative of pain and whether items are specific for pain or for other disorders (anxiety disorder, delirium, dementia, or depression). To quantify content validity, mean scores per item were calculated. RESULTS: Eleven items were indicative of pain, for example, "frowning," "freezing," and "groaning." Fifteen items were considered to be pain-specific, for example, "frowning," "curling up," and "complaining." There were discrepancies between the notion of pain characteristics according to nurses and physicians, especially in the facial expressions domain. DISCUSSION: Within the body movement domain, PAIC items correspond well with the clinical experience of the physicians and nurses. However, items in the facial expressions and vocalizations domains need further study with respect to item reduction. Also, differences were revealed in the notion of pain characteristics between physicians and nurses, suggesting the need for more interdisciplinary education on pain in dementia.