Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research.

BACKGROUND: Dementia is the most common neurological disorder worldwide and is a life-limiting condition, but very often is not recognised as such. People with dementia, and their carers, have been shown to have palliative care needs equal in extent to those of cancer patients. However, many people with advanced dementia are not routinely being assessed to determine their palliative care needs, and it is not clear why this is so. MAIN BODY: An interdisciplinary workshop on "Palliative Care in Neurodegeneration, with a focus on Dementia", was held in Cork, Ireland, in May 2016. The key aim of this workshop was to discuss the evidence base for palliative care for people with dementia, to identify 'gaps' for clinical research, and to make recommendations for interdisciplinary research practice. To lead the discussion throughout the day a multidisciplinary panel of expert speakers were brought together, including both researchers and clinicians from across Ireland and the UK. Targeted invitations were sent to attendees ensuring all key stakeholders were present to contribute to discussions. In total, 49 experts representing 17 different academic and practice settings, attended. Key topics for discussion were pre-selected based on previously identified research priorities (e.g. James Lind Alliance) and stakeholder input. Key discussion topics included: i. Advance Care Planning for people with Dementia; ii. Personhood in End-of-life Dementia care; iii. Topics in the care of advanced dementia at home. These topics were used as a starting point, and the ethos of the workshop was that the attendees could stimulate discussion and debate in any relevant area, not just the key topics, summarised under iv. Other priorities. CONCLUSIONS: The care experienced by people with dementia and their families has the potential to be improved; palliative care frameworks may have much to offer in this endeavour. However, a solid evidence base is required to translate palliative care into practice in the context of dementia. This paper presents suggested research priorities as a starting point to build this evidence base. An interdisciplinary approach to research and priority setting is essential to develop actionable knowledge in this area.

The inter-rater reliability of the Risk Instrument for Screening in the Community.

Predicting risk of adverse healthcare outcomes is important to enable targeted delivery of interventions. The Risk Instrument for Screening in the Community (RISC), designed for use by public health nurses (PHNs), measures the 1-year risk of hospitalisation, institutionalisation and death in community-dwelling older adults according to a five-point global risk score: from low (score 1,2) to medium (3) to high (4,5). We examined the inter-rater reliability (IRR) of the RISC between student PHNs (n=32) and expert raters using six cases (two low, medium and high-risk), scored before and after RISC training. Correlations increased for each adverse outcome, statistically significantly for institutionalisation (r=0.72 to 0.80, p=0.04) and hospitalisation (r=0.51 to 0.71, p<0.01) but not death. Training improved accuracy for low-risk but not all high-risk cases. Overall, the RISC showed good IRR, which increased after RISC training. That reliability fell for some high-risk cases suggests that the training programme requires adjustment to improve IRR further.

The Risk Instrument for Screening in the Community (RISC): a new instrument for predicting risk of adverse outcomes in community dwelling older adults.

BACKGROUND: Predicting risk of adverse healthcare outcomes, among community dwelling older adults, is difficult. The Risk Instrument for Screening in the Community (RISC) is a short (2-5 min), global subjective assessment of risk created to identify patients' 1-year risk of three outcomes:institutionalisation, hospitalisation and death. METHODS: We compared the accuracy and predictive ability of the RISC, scored by Public Health Nurses (PHN), to the Clinical Frailty Scale (CFS) in a prospective cohort study of community dwelling older adults (n = 803), in two Irish PHN sectors. The area under the curve (AUC), from receiver operating characteristic curves and binary logistic regression models, with odds ratios (OR), compared the discriminatory characteristics of the RISC and CFS. RESULTS: Follow-up data were available for 801 patients. The 1-year incidence of institutionalisation, hospitalisation and death were 10.2, 17.7 and 15.6 % respectively. Patients scored maximum-risk (RISC score 3,4 or 5/5) at baseline had a significantly greater rate of institutionalisation (31.3 and 7.1 %, p < 0.001), hospitalisation (25.4 and 13.2 %, p < 0.001) and death (33.5 and 10.8 %, p < 0.001), than those scored minimum-risk (score 1 or 2/5). The RISC had comparable accuracy for 1-year risk of institutionalisation (AUC of 0.70 versus 0.63), hospitalisation (AUC 0.61 versus 0.55), and death (AUC 0.70 versus 0.67), to the CFS. The RISC significantly added to the predictive accuracy of the regression model for institutionalisation (OR 1.43, p = 0.01), hospitalisation (OR 1.28, p = 0.01), and death (OR 1.58, p = 0.001). CONCLUSION: Follow-up outcomes matched well with baseline risk. The RISC, a short global subjective assessment, demonstrated satisfactory validity compared with the CFS.

Evaluating the systematic implementation of the 'Let Me Decide' advance care planning programme in long term care through focus groups: staff perspectives.

BACKGROUND: The 'Let Me Decide' Advance Care Planning (LMD-ACP) programme offers a structured approach to End-of-Life (EoL) care planning in long-term care for residents with and without capacity to complete an advance care directive/plan. The programme was implemented in three homes in the South of Ireland, with a view to improving quality of care at end of life. This paper will present an evaluation of the systematic implementation of the LMD-ACP programme in the homes. METHODS: Focus groups were conducted with 15 Clinical Nurse Managers and two Directors of Nursing where the programme had been implemented. A semi-structured topic guide was used to direct questions that addressed implementation process, challenges implementing advance care planning, advantages/disadvantages and recommendations for the future. Data was analysed using manifest content analysis. RESULTS: Five key categories emerged, with 16 corresponding subcategories. These subcategories emerged as a result of 37 codes. Key benefits of the programme included enhancing communication, changing the care culture, promoting preference-based care and avoiding crisis decision making. Establishing capacity among residents and indecision were among the main challenges reported by staff. DISCUSSION: A number of recommendations were proposed by participants and included multi-disciplinary team involvement, and a blended approach to education on the topic. According to participants relationships with residents deepened, there was a more open and honest environment with family, end of life care focused more on symptom management, comfort and addressing spiritual care needs as opposed to crisis decision making and family conflict. CONCLUSION: The introduction of the LMD-ACP programme enhanced the delivery of care in the long-term care sites and led to a more open and positive care environment.

The ERß5 splice variant increases oestrogen responsiveness of ERαpos Ishikawa cells.

Endometrial cancer is a common gynaeological malignancy: life time exposure to oestrogen is a key risk factor. Oestrogen action is mediated by receptors encoded by ESR1 (ERα) and ESR2 (ERß): ERα plays a key role in regulating endometrial cell proliferation. A truncated splice variant isoform (ERß5) encoded by ESR2 is highly expressed in cancers. This study explored whether ERß5 alters oestrogen responsiveness of endometrial epithelial cells. Immunhistochemistry profiling of human endometrial cancer tissue biopsies identified epithelial cells co-expressing ERß5 and ERα in stage I endometrial adenocarcinomas and post menopausal endometrium. Induced co-expression of ERß5 in ERαpos endometrial cancer cells (Ishikawa) significantly increased ligand-dependent activation of an ERE-luciferase reporter stimulated by either E2 or the ERα-selective agonist 1,3,5-(4-hydroxyphenyl)-4-propyl-1H-pyrazole (PPT) compared to untransfected cells. Fluorescence recovery after photobleaching (FRAP) analysis of tagged yellow fluorescent protein (YFP)-ERß5 transfected into Ishikawa cells revealed that incubation with E2 induced a transient reduction in intra-nuclear mobility characterised by punctate protein redistribution which phenocopied the behaviour of ERα following ligand activation with E2. In ERαneg MDA-MD-231 breast cancer cells, there was no E2-dependent change in mobility of YFP-ERß5 and no activation of the ERE reporter in cells expressing ERß5. In conclusion, we demonstrate that ERß5 can act as heterodimeric partner to ERα in Ishikawa cells and increases their sensitivity to E2. We speculate that expression of ERß5 in endometrial epithelial cells may increase the risk of malignant transformation and suggest that immunostaining for ERß5 should be included in diagnostic assessment of women with early grade cancers.

Assessment of inhaler technique among fourth-year pharmacy students: Implications for the use of entrustable professional activities.

INTRODUCTION: It is unknown when and how often competency assessments should occur in pharmacy education. Using inhaler technique as an example competency, the study objectives were to measure the proportion of near-graduation students demonstrating correct technique approximately one year after initial training and to measure reliability between assessors. METHODS: A sample of 45 near-graduation pharmacy students with prior education on correct inhaler technique participated in this direct observation study at the University of Otago. Five trained assessors simultaneously rated each participant's inhaler technique demonstration using a checklist. RESULTS: Of 37 participants demonstrating a pressurized metered dose inhaler, 21.62% demonstrated correct technique. No participants among eight volunteers demonstrated proper use of a dry powder inhaler. On average, two steps were performed correctly for each inhaler type. Steps with the highest error rate were "hold the inhaler upright and shake well," "breath out gently, away from the inhaler," and "keep breathing in slowly and deeply". The intraclass correlation coefficient for any inhaler type was excellent (0.91), suggesting assessors had strong reliability. CONCLUSIONS: Students did not retain ability to correctly demonstrate inhaler technique one year after initial instruction. This finding supports the notion that demonstrable tasks may need to be frequently assessed to ensure the task is mastered and becomes a routine part of a student's practice. It also suggests that assessment of milestones and/or entrustable professional activities may need to occur at different time points throughout a program, rather than allowing for "signing off" prematurely.

Advance care planning: A systematic review of randomised controlled trials conducted with older adults.

Advance care planning (ACP), involving discussions between patients, families and healthcare professionals on future healthcare decisions, in advance of anticipated impairment in decision-making capacity, improves satisfaction and end-of-life care while respecting patient autonomy. It usually results in the creation of a written advanced care directive (ACD). This systematic review examines the impact of ACP on several outcomes (including symptom management, quality of care and healthcare utilisation) in older adults (>65years) across all healthcare settings. Nine randomised controlled trials (RCTs) were identified by searches of the CINAHL, PubMed and Cochrane databases. A total of 3646 older adults were included (range 72-88 years). Seven studies were conducted with community dwellers and the other two RCTs were conducted in nursing homes. Most studies did not implement a standardised ACD, or measure the impact on quality of end-of-life care or on the death and dying experience. All studies had some risk of bias, with most scoring poorly on the Oxford Quality Scale. While ACP interventions are well received by older adults and generally have positive effects on outcomes, this review highlights the need for well-designed RCTs that examine the economic impact of ACP and its effect on quality of care in nursing homes and other sectors.

Risk prediction in the community: A systematic review of case-finding instruments that predict adverse healthcare outcomes in community-dwelling older adults.

Few case-finding instruments are available to community healthcare professionals. This review aims to identify short, valid instruments that detect older community-dwellers risk of four adverse outcomes: hospitalisation, functional-decline, institutionalisation and death. Data sources included PubMed and the Cochrane library. Data on outcome measures, patient and instrument characteristics, and trial quality (using the Quality In Prognosis Studies [QUIPS] tool), were double-extracted for derivation-validation studies in community-dwelling older adults (>50 years). Forty-six publications, representing 23 unique instruments, were included. Only five were externally validated. Mean patient age range was 64.2-84.6 years. Most instruments n=18, (78%) were derived in North America from secondary analysis of survey data. The majority n=12, (52%), measured more than one outcome with hospitalisation and the Probability of Repeated Admission score the most studied outcome and instrument respectively. All instruments incorporated multiple predictors. Activities of daily living n=16, (70%), was included most often. Accuracy varied according to instruments and outcomes; area under the curve of 0.60-0.73 for hospitalisation, 0.63-0.78 for functional decline, 0.70-0.74 for institutionalisation and 0.56-0.82 for death. The QUIPS tool showed that 5/23 instruments had low potential for bias across all domains. This review highlights the present need to develop short, reliable, valid instruments to case-find older adults at risk in the community.

Which Part of a Short, Global Risk Assessment, the Risk Instrument for Screening in the Community, Predicts Adverse Healthcare Outcomes?

The Risk Instrument for Screening in the Community (RISC) is a short, global risk assessment to identify community-dwelling older adults' one-year risk of institutionalisation, hospitalisation, and death. We investigated the contribution that the three components of the RISC (concern, its severity, and the ability of the caregiver network to manage concern) make to the accuracy of the instrument, across its three domains (mental state, activities of daily living (ADL), and medical state), by comparing their accuracy to other assessment instruments in the prospective Community Assessment of Risk and Treatment Strategies study. RISC scores were available for 782 patients. Across all three domains each subtest more accurately predicted institutionalisation compared to hospitalisation or death. The caregiver network's ability to manage ADL more accurately predicted institutionalisation (AUC 0.68) compared to hospitalisation (AUC 0.57, P = 0.01) or death (AUC 0.59, P = 0.046), comparing favourably with the Barthel Index (AUC 0.67). The severity of ADL (AUC 0.63), medical state (AUC 0.62), Clinical Frailty Scale (AUC 0.67), and Charlson Comorbidity Index (AUC 0.66) scores had similar accuracy in predicting mortality. Risk of hospitalisation was difficult to predict. Thus, each component, and particularly the caregiver network, had reasonable accuracy in predicting institutionalisation. No subtest or assessment instrument accurately predicted risk of hospitalisation.