The relative meaning of absolute numbers: the case of pain intensity scores as decision support systems for pain management of patients with dementia

Abstract

BackgroundAssessment and management of pain in patients with dementia is known to be challenging, due to patients’ cognitive and/or communication difficulties. In the UK, pain in hospital is managed through regular assessments, with the use of pain intensity scores as triggers for action. The aim of this study was to understand current pain assessment practices, in order to later inform the development of a decision support tool designed to improve the management of pain for people with dementia in hospital.MethodsAn exploratory study was conducted in four hospitals in the UK (11 wards), with observations of patients with dementia (n = 31), interviews of staff (n = 52) and patients’ family members (n = 4) and documentary analysis. A thematic analysis was carried out, structured along dimensions of decision making. This paper focuses on the emergent themes related to the use of assessment tools and pain intensity scores.ResultsA variety of tools were used to record pain intensity, usually with numerical scales. None of the tools in actual use had been specifically designed for patients with cognitive impairment. With patients with more severe dementia, the patient’s body language and other cues were studied to infer pain intensity and then a score entered on behalf of the patient. Information regarding the temporality of pain and changes in pain experience (rather than a score at a single point in time) seemed to be most useful to the assessment of pain.ConclusionsGiven the inherent uncertainty of the meaning of pain scores for patients with dementia, numerical scales were used with caution. Numerical scores triggered action but their meaning was relative - to the patient, to the clinician, to the time of recording and to the purpose of documenting. There are implications for use of data and computerized decision support systems design. Decision support interventions should include personalized alerting cut-off scores for individual patients, display pain scores over time and integrate professional narratives, mitigating uncertainties around single pain scores for patients with dementia.Electronic supplementary materialThe online version of this article (doi:10.1186/s12911-015-0233-8) contains supplementary material, which is available to authorized users.

Orofacial pain assessment and management for patients with dementia: A meta‐ethnography

“…The data included in this evidence synthesis arise from studies containing 739 focus group or interview participants including 32 patients, 90 relatives, 22 doctors, 414 nurses, 129 healthcare or nursing assistants and 20 managerial staff. In addition, four studies used ethnography and contained data from observation of the care of 316 patients over a period of 370 hours. The studies included data collected between 2003 and 2016 with all studies being conducted in developed nations.…”

“…Family members were able to contribute to the process of pain identification through potentially different experiences and knowledge compared with those used to inform assessment by professional carers . The use of pain scales, such as “PAIN‐DEM”, or PAINAD was described, and was a focus of certain studies . These tools, however, were generally seen as challenging to use for patients with dementia and confusing to use in the absence of verbal communication .…”

“…The use of pain scales, such as “PAIN‐DEM”, or PAINAD was described, and was a focus of certain studies . These tools, however, were generally seen as challenging to use for patients with dementia and confusing to use in the absence of verbal communication . It was regularly acknowledged that pain is underreported …”

Intrathecal pain management: a team-based approach

“… 65 Advantages of numeric pain rating scales include ease of use, high compliance, and sensitivity to treatment effects. 65 , 66 When evaluating pain in patients with cognitive impairment or an inability to communicate, the practitioner may rely more on clinical expertise and caregivers than on patient self-evaluation, 67 , 68 which is another critical reason for evaluating the patient’s social support system prior to IT device implantation. In addition, standardized, observational assessment tools have been developed for evaluating pain in patients unable to use numeric/visual rating scales, including patients with cognitive impairment, critically ill patients, and children.…”

Clinimetric properties of the electronic Pain Assessment Tool (ePAT) for aged-care residents with moderate to severe dementia

“…Use of an electronic pain-assessment tool, which eases the process of documentation and pain tracking over time, has the potential to positively impact the tool’s CU through facilitating information on the temporality (ie, trends and patterns) of pain. In this regard, it is worth highlighting that the temporality of pain was regarded as “most useful to the assessment of pain” by Lichtner et al 28 This potential strength of the ePAT application needs to be researched further in future.…”