Nicola White

Pain, agitation, and behavioural problems in people with dementia admitted to general hospital wards: a longitudinal cohort study

Abstract Pain is underdetected and undertreated in people with dementia. We aimed to investigate the prevalence of pain in people with dementia admitted to general hospitals and explore the association between pain and behavioural and psychiatric symptoms of dementia (BPSD). We conducted a longitudinal cohort study of 230 people, aged above 70, with dementia and unplanned medical admissions to 2 UK hospitals. Participants were assessed at baseline and every 4 days for self-reported pain (yes/no question and FACES scale) and observed pain (Pain Assessment in Advanced Dementia scale [PAINAD]) at movement and at rest, for agitation (Cohen–Mansfield Agitating Inventory [CMAI]) and BPSD (Behavioural Pathology in Alzheimer Disease Scale [BEHAVE-AD]). On admission, 27% of participants self-reported pain rising to 39% on at least 1 occasion during admission. Half of them were able to complete the FACES scale, this proportion decreasing with more severe dementia. Using the PAINAD, 19% had pain at rest and 57% had pain on movement on at least 1 occasion (in 16%, this was persistent throughout the admission). In controlled analyses, pain was not associated with CMAI scores but was strongly associated with total BEHAVE-AD scores, both when pain was assessed on movement (&bgr; = 0.20, 95% confidence interval [CI] = 0.07-0.32, P = 0.002) and at rest (&bgr; = 0.41, 95% CI = 0.14-0.69, P = 0.003). The association was the strongest for aggression and anxiety. Pain was common in people with dementia admitted to the acute hospital and associated with BPSD. Improved pain management may reduce distressing behaviours and improve the quality of hospital care for people with dementia.

Behavioural and psychiatric symptoms in people with dementia admitted to the acute hospital: prospective cohort study.

BACKGROUND Dementia is common in older people admitted to acute hospitals. There are concerns about the quality of care they receive. Behavioural and psychiatric symptoms of dementia (BPSD) seem to be particularly challenging for hospital staff. AIMS To define the prevalence of BPSD and explore their clinical associations. METHOD Longitudinal cohort study of 230 people with dementia, aged over 70, admitted to hospital for acute medical illness, and assessed for BPSD at admission and every 4 (± 1) days until discharge. Other measures included length of stay, care quality indicators, adverse events and mortality. RESULTS Participants were very impaired; 46% at Functional Assessment Staging Scale (FAST) stage 6d or above (doubly incontinent), 75% had BPSD, and 43% had some BPSD that were moderately/severely troubling to staff. Most common were aggression (57%), activity disturbance (44%), sleep disturbance (42%) and anxiety (35%). CONCLUSIONS We found that BPSD are very common in older people admitted to an acute hospital. Patients and staff would benefit from more specialist psychiatric support.

A systematic review of predictions of survival in palliative care: How accurate are clinicians and who are the experts?

Background Prognostic accuracy in palliative care is valued by patients, carers, and healthcare professionals. Previous reviews suggest clinicians are inaccurate at survival estimates, but have only reported the accuracy of estimates on patients with a cancer diagnosis. Objectives To examine the accuracy of clinicians’ estimates of survival and to determine if any clinical profession is better at doing so than another. Data Sources MEDLINE, Embase, CINAHL, and the Cochrane Database of Systematic Reviews and Trials. All databases were searched from the start of the database up to June 2015. Reference lists of eligible articles were also checked. Eligibility Criteria Inclusion criteria: patients over 18, palliative population and setting, quantifiable estimate based on real patients, full publication written in English. Exclusion criteria: if the estimate was following an intervention, such as surgery, or the patient was artificially ventilated or in intensive care. Study Appraisal and Synthesis Methods A quality assessment was completed with the QUIPS tool. Data on the reported accuracy of estimates and information about the clinicians were extracted. Studies were grouped by type of estimate: categorical (the clinician had a predetermined list of outcomes to choose from), continuous (open-ended estimate), or probabilistic (likelihood of surviving a particular time frame). Results 4,642 records were identified; 42 studies fully met the review criteria. Wide variation was shown with categorical estimates (range 23% to 78%) and continuous estimates ranged between an underestimate of 86 days to an overestimate of 93 days. The four papers which used probabilistic estimates tended to show greater accuracy (c-statistics of 0.74–0.78). Information available about the clinicians providing the estimates was limited. Overall, there was no clear “expert” subgroup of clinicians identified. Limitations High heterogeneity limited the analyses possible and prevented an overall accuracy being reported. Data were extracted using a standardised tool, by one reviewer, which could have introduced bias. Devising search terms for prognostic studies is challenging. Every attempt was made to devise search terms that were sufficiently sensitive to detect all prognostic studies; however, it remains possible that some studies were not identified. Conclusion Studies of prognostic accuracy in palliative care are heterogeneous, but the evidence suggests that clinicians’ predictions are frequently inaccurate. No sub-group of clinicians was consistently shown to be more accurate than any other. Implications of Key Findings Further research is needed to understand how clinical predictions are formulated and how their accuracy can be improved.

How accurate is the ‘Surprise Question’ at identifying patients at the end of life? A systematic review and meta-analysis

BackgroundClinicians are inaccurate at predicting survival. The ‘Surprise Question’ (SQ) is a screening tool that aims to identify people nearing the end of life. Potentially, its routine use could help identify patients who might benefit from palliative care services. The objective was to assess the accuracy of the SQ by time scale, clinician, and speciality.MethodsSearches were completed on Medline, Embase, CINAHL, AMED, Science Citation Index, Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trials, Open Grey literature (all from inception to November 2016). Studies were included if they reported the SQ and were written in English. Quality was assessed using the Newcastle–Ottawa Scale.ResultsA total of 26 papers were included in the review, of which 22 reported a complete data set. There were 25,718 predictions of survival made in response to the SQ. The c-statistic of the SQ ranged from 0.512 to 0.822. In the meta-analysis, the pooled accuracy level was 74.8% (95% CI 68.6–80.5). There was a negligible difference in timescale of the SQ. Doctors appeared to be more accurate than nurses at recognising people in the last year of life (c-statistic = 0.735 vs. 0.688), and the SQ seemed more accurate in an oncology setting 76.1% (95% CI 69.7–86.3).ConclusionsThere was a wide degree of accuracy, from poor to reasonable, reported across studies using the SQ. Further work investigating how the SQ could be used alongside other prognostic tools to increase the identification of people who would benefit from palliative care is warranted.Trial registrationPROSPERO CRD42016046564.

When pain memories are lost: A pilot study of semantic knowledge of pain in dementia

OBJECTIVE It has been documented that pain in people with dementia is often under-reported and poorly detected. The reasons for this are not clearly defined. This project aimed to explore semantic concepts of pain in people with dementia and whether this is associated with clinical pain report. DESIGN Cohort study with nested cross-sectional analysis. SETTING Acute general hospital medical wards for older people. SUBJECTS People with dementia (N = 26) and control participants (N = 13). METHODS Two subtests of semantic memory for pain: (1) Identifying painful situations from a standardized range of pictures; (2) Describing the concept of pain. Participants also indicated whether they were in pain or not, were observed for pain (PAINAD scale) and completed the Wong-Baker FACES scale to indicate pain severity. RESULTS Compared with the control group, people with dementia were less able to identify painful situations and used fewer categories to define their concept of pain. In turn, the performance on these two measures was related to the reported presence and, albeit less strongly, to the reported severity of pain, indicating that a reduction in semantic memory for pain is associated with a decline in reported pain. CONCLUSIONS This study is the first to show that semantic memory for pain is diminished in dementia patients. When using clinical pain tools, clinicians should consider these effects which may bias clinical pain ratings when they evaluate and manage pain in these patients. This might improve the recognition and management of pain in people with dementia.

The management of behavioural and psychological symptoms of dementia in the acute general medical hospital: a longitudinal cohort study.

The acute hospital is a challenging place for a person with dementia. Behavioural and psychological symptoms of dementia (BPSD) are common and may be exacerbated by the hospital environment. Concerns have been raised about how BPSD are managed in this setting and about over reliance on neuroleptic medication. This study aimed to investigate how BPSD are managed in UK acute hospitals.

Psychometric evaluation of the Cohen-Mansfield Agitation Inventory in an acute general hospital setting

The Cohen‐Mansfield Agitation Inventory (CMAI; (Cohen‐Mansfield and Kerin, 1986)) is a well‐known tool for assessing agitated behaviours in people with dementia who reside in long‐term care. No studies have evaluated the psychometric qualities and factor structure of the CMAI in acute general hospitals, a setting where people with demand may become agitated.

44 An evidenced-based heuristics model (or rule of thumb) to improve doctors’ intuition about when patients are imminently dying

Introduction Evidence suggests that the majority of doctors are not very good at identifying when a patient is dying1 however there is little training available to improve this skill. Even experts are unable to articulate how they recognise when a patient is dying other than by saying that ‘I just knew’.2 Aim To understand how expert palliative care doctors recognise a dying person. Methods Rather than relying on ‘years of experience’ as a surrogate measure of expertise we developed a test to identify which doctors really are the prognostic ‘experts’. The prognostic test consisted of 20 real patient case summaries. Participants (palliative care doctors) were asked to predict whether or not they expected the patient to die within the next 3 days. Those who were the most accurate at this task were deemed to be the ‘prognostic experts’ and were invited to complete an additional online judgement task. In this task it was possible to identify which factors were most influential in their prognostic decision-making. Results 19/99 doctors who completed the prognostic test were deemed to be ‘experts’. Of those 14 also completed the additional judgement task. The following factors influenced the experts’ decisions: Cheyne Stokes breathing palliative performance score (PPS) a decline in condition in the previous 24 hours respiratory secretions cyanosis and level of agitation or sedation. Conclusion This novel study presents a simple evidenced-based heuristic (or rule of thumb) to help novices recognise when a patient is imminently dying. References . Neuberger J, Guthrie C, Aaronovitch D. More care less pathway: A review of the Liverpool Care Pathway. Department of Health2013. . Taylor P, Dowding D, Johnson M. Clinical decision making in the recognition of dying: A qualitative interview study. BMC Palliative Care2017;16(1):11.

Pain and delirium in people with dementia in the acute general hospital setting

Abstract Background Pain and delirium are common in people with dementia admitted to hospitals. These are often under-diagnosed and under-treated. Pain is implicated as a cause of delirium but this association has not been investigated in this setting. Objective To investigate the relationship between pain and delirium in people with dementia, on admission and throughout a hospital admission. Design Exploratory secondary analysis of observational prospective longitudinal cohort data. Setting Two acute hospitals in the UK. Methodology Two-hundred and thirty participants aged ≥70 years were assessed for dementia severity, delirium ((Confusion Assessment Method (CAM), pain (Pain Assessment in Advanced Dementia (PAINAD)) scale and prescription of analgesics. Logistic and linear regressions explored the relationship between pain and delirium using cross-sectional data. Results Pain at rest developed in 49%, and pain during activity for 26% of participants during their inpatient stay. Incident delirium developed in 15%, of participants, and 42% remained delirious for at least two assessments. Of the 35% of participants who were delirious and unable to self-report pain, 33% of these participants experienced pain at rest, and 56 experienced pain during activity. The odds of being delirious were 3.26 times higher in participants experiencing pain at rest (95% Confidence Interval 1.03–10.25, P = 0.044). Conclusion An association between pain at rest and delirium was found, suggesting pain may be a risk factor for delirium. Since pain and delirium were found to persist and develop during an inpatient stay, regular pain and delirium assessments are required to manage pain and delirium effectively.

60 Can the ‘surprise question‘ be used to correctly identify people nearing the end of life?: a review

Introduction It has been shown that clinicians are inaccurate at prognostication (White et al., 2016) and recognising dying patients (Neuberger et al., 2013). Patients who would benefit from palliative care may be missed because validated prognostic tools (Pirovano et al., 1999; Morita et al., 1999) are not routinely used, either due to the perceived complexity or inconvenience. The surprise question (SQ) (“Would you be surprised if this patient died within the next χ months?”) offers an alternative to standard prognostic estimates. Aim To evaluate the performance of the SQ in patients nearing the end of life. Methods We searched numerous databases, including: Medline, Embase, CINAHL, AMED. Studies were included if they reported the SQ and were written in English. Results Out of the 357 studies identified, 22 were included in the review. In these studies, 25 718 estimates were reported. The results showed a wide variation in the reported accuracy of the SQ, with sensitivity ranging from 11.6% to 96.6% and specificity ranging from 13.9% to 78.6%. The AUROC score across the studies ranged from 0.512 to 0.822. Doctors appeared to be more accurate than nurses at recognising people in the last year of life (c-statistic=0.735 vs. 0.688). Conclusions The performance of the SQ varied greatly across the studies. Further work is required to understand the processes by which clinicians arrive at their prognostic estimates, to refine the accuracy of the SQ and to compare its performance against other more sophisticated prognostic tools, particularly in populations where a higher proportions of deaths occur. References . Morita, T., Tsunoda, J., Inoue, S. and Chihara, S., 1999. The Palliative Prognostic Index: a scoring system for survival prediction of terminally ill cancer patients. Supportive Care in Cancer, 7(3), pp.128–133. . Neuberger, J., Guthrie, C. and Aaronovitch, D., 2013. More care, less pathway: a review of the Liverpool Care Pathway. Department of Health. . Pirovano, M., Maltoni, M., Nanni, O., Marinari, M., Indelli, M., Zaninetta, G., Petrella, V., Barni, S., Zecca, E., Scarpi, E. and Labianca, R., 1999. A new palliative prognostic score: a first step for the staging of terminally ill cancer patients. Journal of pain and symptom management, 17(4), pp.231–239. . White, N., Reid, F., Harris, A., Harries, P. and Stone, P., 2016. A systematic review of predictions of survival in palliative care: How accurate are clinicians and who are the experts?. PLoS One, 11(8), p.e0161407.