Palliative care triggers in progressive neurodegenerative conditions : An evaluation using a multi-centre retrospective case record review and principal component analysis

BACKGROUND: The use of specific triggers has been suggested to help identify patients with progressive neurological disease who would benefit from palliative care. AIM: This study aimed to improve the evidence base for the use of triggers for patients with progressive neurological disease. DESIGN: An evaluation of palliative care services was undertaken using a retrospective case note review of the timing and presence of triggers in the last 2 years of life. SETTING/PARTICIPANTS: A total of 12 specialist palliative care units across the United Kingdom provided data from 300 patients: mean patient age 70 years, 50% male, diagnoses included motor neurone disease 58%, Parkinson's disease 17% and Parkinson's Plus syndromes 12%. RESULTS: There was a high burden of triggers - 17 in the last 2 years of life and 10 in the last 6 months of life. The most frequent triggers were deteriorating physical function, complex symptoms and dysphagia. Four factors were found to explain 64% of the total variance: Factor 1 - Deterioration in physical function, dysphagia, significant complex symptoms and pain; Factor 2 - Weight loss and respiratory symptoms; Factor 3 - Recurrent infections and cognitive decline; Factor 4 - Aspiration pneumonia. Cox regression analyses found different triggers were associated with survival from diagnosis versus survival from referral to palliative care. Different triggers were also associated with survival for different neurological conditions. CONCLUSION: This study demonstrates that there is a high burden of triggers in the last months and years of life and that these could potentially be reduced to fewer components. Prospective studies assessing which triggers are useful for different conditions are now required

Evaluation of the impact of the NICE head injury guidelines on inpatient mortality from traumatic brain injury : an interrupted time series analysis

Objective To evaluate the impact of National Institute for Health and Care Excellence (NICE) head injury guidelines on deaths and hospital admissions caused by traumatic brain injury (TBI). Setting All hospitals in England between 1998 and 2017. Participants Patients admitted to hospital or who died up to 30 days following hospital admission with International Classification of Diseases (ICD) coding indicating the reason for admission or death was TBI. Intervention An interrupted time series analysis was conducted with intervention points when each of the three guidelines was introduced. Analysis was stratified by guideline recommendation specific age groups (0–15, 16–64 and 65+). Outcome measures The monthly population mortality and admission rates for TBI. Study design An interrupted time series analysis using complete Office of National Statistics cause of death data linked to hospital episode statistics for inpatient admissions in England. Results The monthly TBI mortality and admission rates in the 65+ age group increased from 0.5 to 1.5 and 10 to 30 per 100 000 population, respectively. The increasing mortality rate was unaffected by the introduction of any of the guidelines. The introduction of the second NICE head injury guideline was associated with a significant reduction in the monthly TBI mortality rate in the 16–64 age group (-0.005; 95% CI: −0.002 to −0.007). In the 0–15 age group the TBI mortality rate fell from around 0.05 to 0.01 per 100 000 population and this trend was unaffected by any guideline. Conclusion The introduction of NICE head injury guidelines was associated with a reduced admitted TBI mortality rate after specialist care was recommended for severe TBI. The improvement was solely observed in patients aged 16–64 years. The cause of the observed increased admission and mortality rates in those 65+ and potential treatments for TBI in this age group require further investigation

Workplace Stress, Presenteeism, Absenteeism, and Resilience Amongst University Staff and Students in the COVID-19 Lockdown

Background: This study explored how the COVID-19 outbreak and arrangements such as remote working and furlough affect work or study stress levels and functioning in staff and students at the University of York, UK. Methods: An invitation to participate in an online survey was sent to all University of York staff and students in May-June 2020. We measured stress levels [VAS-scale, Perceived Stress Questionnaire (PSQ)], mental health [anxiety (GAD-7), depression (PHQ-9)], physical health (PHQ-15, chronic medical conditions checklist), presenteeism, and absenteeism levels (iPCQ). We explored demographic and other characteristics as factors which may contribute to resilience and vulnerability for the impact of COVID-19 on stress. Results: One thousand and fifty five staff and nine hundred and twenty five students completed the survey. Ninety-eight per cent of staff and seventy-eight per cent of students worked or studied remotely. 7% of staff and 10% of students reported sickness absence. 26% of staff and 40% of the students experienced presenteeism. 22-24% of staff reported clinical-level anxiety and depression scores, and 37.2 and 46.5% of students. Staff experienced high stress levels due to COVID-19 (66.2%, labeled vulnerable) and 33.8% experienced low stress levels (labeled resilient). Students were 71.7% resilient vs. 28.3% non-resilient. Predictors of vulnerability in staff were having children [OR = 2.23; CI (95) = 1.63-3.04] and social isolation [OR = 1.97; CI (95) = 1.39-2.79] and in students, being female [OR = 1.62; CI (95) = 1.14-2.28], having children [OR = 2.04; CI (95) = 1.11-3.72], and social isolation [OR = 1.78; CI (95) = 1.25-2.52]. Resilience was predicted by exercise in staff [OR = 0.83; CI (95) = 0.73-0.94] and in students [OR = 0.85; CI (95) = 0.75-0.97]. Discussion: University staff and students reported high psychological distress, presenteeism and absenteeism. However, 33.8% of staff and 71.7% of the students were resilient. Amongst others, female gender, having children, and having to self-isolate contributed to vulnerability. Exercise contributed to resilience. Conclusion: Resilience occurred much more often in students than in staff, although psychological distress was much higher in students. This suggests that predictors of resilience may differ from psychological distress per se. Hence, interventions to improve resilience should not only address psychological distress but may also address other factors

Life Story Work in Dementia Care : Summary of findings

In 2012 the Social Policy Research Unit at the University of York launched the first study of its kind to investigate life story work from first principles. We asked: What is life story work? What is considered to be good practice in life story work in dementia care? How do service providers and family carers use life story work? Can life story work be evaluated in real world care settings? What are the costs of doing life story work as part of everyday care

Assessment of Cytokines, microRNA and patient related outcome measures in Conversion Disorder/Functional Neurological Disorder (CD/FND) : the CANDO clinical feasibility study

Background: Conversion disorder/functional neurological disorder (CD/FND) occurs often in neurological settings and can lead to long-term distress, disability and demand on health care services. Systemic low-grade inflammation might play a role, however, the pathogenic mechanism is still unknown. Aim: 1) To explore the feasibility to establish and assess a cohort of CD/FND with motor symptoms, involving persons with lived experience (PPI). 2) To generate proof of concept regarding a possible role for cytokines, microRNA, cortisol levels and neurocognitive symptoms in patients with motor CD/FND. Method: Feasibility study. Results: The study showed active involvement of patients despite high clinical illness burden and disability, neurocognitive symptoms, childhood adverse experiences (ACE) and current life events. The study provided valuable knowledge regarding the feasibility of conducting a study in these patients that will inform future study phases. In the sample there were elevated levels of IL6, IL12, IL17A, IFNg, TNFa and VEGF-a, suggesting systemic low-grade inflammation. Also, microRNAs involved in inflammation and vascular inflammation were correlated with TNFa and VEGFa respectively, suggesting proof of concept for an epigenetic mechanism. Owing to the COVID-19 outbreak, the patient sample was limited to 15 patients. Conclusion: It is a novelty that this study is conducted in the clinical setting. This innovative, translational study explores stress-related SLI in CD/FND patients and the feasibility of a larger project aiming to develop new treatments for this vulnerable population. Given the positive findings, there is scope to conduct further research into the mechanism of disease in CD/FND

HIDDen: Hospice Inpatient Deep vein thrombosis Detection prospective longitudinal observational study to explore the prevalence, symptom burden and natural history of venous thromboembolism in people with advanced cancer

BACKGROUND: The prevalence of deep venous thrombosis in patients with advanced cancer is unconfirmed and it is unknown whether current international thromboprophylaxis guidance is applicable to this population. We aimed to determine prevalence and predictors of femoral deep vein thrombosis in patients admitted to specialist palliative care units (SPCUs). METHODS: We did this prospective longitudinal observational study in five SPCUs in England, Wales, and Northern Ireland (four hospices and one palliative care unit). Consecutive adults with cancer underwent bilateral femoral vein ultrasonography on admission and weekly until death or discharge for a maximum of 3 weeks. Data were collected on performance status, attributable symptoms, and variables known to be associated with venous thromboembolism. Patients with a short estimated prognosis (<5 days) were ineligible. The primary endpoint of the study was the prevalence of femoral deep vein thrombosis within 48 h of SPCU admission, analysed by intention to treat. This study is registered with the ISRCTN registry, number ISRCTN97567719. FINDINGS: Between June 20, 2016, and Oct 16, 2017, 343 participants were enrolled (mean age 68·2 years [SD 12·8; range 25-102]; 179 [52%] male; mean Australian-modified Karnofsky performance status 49 [SD 16·6; range 20-90]). Of 273 patients with evaluable scans, 92 (34%, 95% CI 28-40) had femoral deep vein thrombosis. Four participants with a scan showing no deep vein thrombosis on admission developed a deep vein thrombosis on repeat scanning over 21 days. Previous venous thromboembolism (p=0·014), being bedbound in the past 12 weeks for any reason (p=0·003), and lower limb oedema (p=0·009) independently predicted deep vein thrombosis. Serum albumin concentration (p=0·43), thromboprophylaxis (p=0·17), and survival (p=0·45) were unrelated to deep vein thrombosis. INTERPRETATION: About a third of patients with advanced cancer admitted to SPCUs had a femoral deep vein thrombosis. Deep vein thrombosis was not associated with thromboprophylaxis, survival, or symptoms other than leg oedema. These findings are consistent with venous thromboembolism being a manifestation of advanced disease rather than a cause of premature death. Thromboprophylaxis for SPCU inpatients with poor performance status seems to be of little benefit. FUNDING: National Institute for Health Research (Research for Patient Benefit programme)

Modifying and validating the social responsiveness scale edition 2 for use with deaf children and young people

A Delphi consensus methodology was used to adapt a screening tool, the Social Responsiveness Scale- 2 (SRS-2), for use with deaf children including those whose preferred communication method is sign language. Using this approach; 27 international experts (The Delphi International Expert Panel), on the topic of autism spectrum disorder (ASD) in deaf people, contributed to the review of item content. A criterion for agreement was set at 80% of experts on each item (with 75% acceptable in the final fourth round). The agreed modifications are discussed. The modified SRS-2 research adaptation for deaf people (referred to here as the "SRS-2 Deaf adaptation") was then translated into British Sign Language using a robust translation methodology and validated in England in a sample of 198 deaf children, 76 with Autism Spectrum Disorders (ASD) and 122 without ASD. The SRS-2 Deaf adaptation was compared blind to a NICE (National Institute for Health and Care Excellence) guideline standard clinical assessment. The area under the Receiver Operating (ROC) curve was 0.811 (95% CI: 0.753, 0.869), with an optimal cut-off value of 73, which gave a sensitivity of 82% and a specificity of 67%. The Cronbach Alpha coefficient was 0.968 suggesting high internal consistency. The Intraclass Correlation Coefficient was 0.897, supporting test-retest reliability. This performance is equivalent to similar instruments used for screening ASD in the hearing population

Longitudinal realist evaluation of the dementia PersonAlised care team (D-PACT) intervention: protocol

BACKGROUND: Different dementia support roles exist but evidence is lacking on which aspects are best, for whom and in what circumstance, and on their associated costs and benefits. Phase 1 of the Dementia PersonAlised Care Team programme (D-PACT), developed a post-diagnostic primary care-based intervention for people with dementia and their carers and assessed the feasibility of a trial. AIM: Phase 2 of the programme aims to 1) refine our programme theory on how, when and for whom the intervention works and 2) evaluate its value and impact. DESIGN & SETTING: A realist longitudinal mixed-methods evaluation will be conducted in urban, rural, and coastal areas across Southwest and Northwest England where low-income groups or ethnic minorities (eg, South Asian) are represented. Design was informed by patient, public and professional stakeholder input and Phase one findings. METHOD: High volume qualitative and quantitative data will be collected longitudinally from people with dementia, carers and practitioners. Analyses will comprise: 1) realist longitudinal case studies; 2) conversation analysis of recorded interactions; 3) statistical analyses of outcome and experience questionnaires; 4 a) health economic analysis examining costs of delivery; 4b) realist economic analysis of high-cost events and 'near misses'. All findings will be synthesised using a joint display table, evidence appraisal tool, triangulation and stakeholder co-analysis. CONCLUSION: Our realist evaluation will describe how, why and for whom the intervention leads (or not) to change over time; it also demonstrates how a non-randomised design can be more appropriate for complex interventions with similar questions or populations

Palliative care for non-cancer conditions in primary care : a time trend analysis in the UK (2009-2014)

Objectives Whilst guidelines recommend palliative care in non-cancer conditions, this has not been widely implemented. We examined whether the recording of a palliative care approach and the numbers of hospital deaths for deceased patients with heart failure, dementia, chronic obstructive pulmonary disease (COPD) and cancer have changed since the UK End of Life Care Strategy was introduced. Methods We conducted sequential cross-sectional studies of decedents within the UK’s Clinical Practice Research Datalink and Hospital Episode Statistics. All adults with a primary care record of COPD (N=5,426), dementia (N=7,339), heart failure (N=6,409) or cancer (N=18,668) who died during three one-year periods (April 2009-March 2014) were included. Evidence of a palliative care approach was identified from primary care records, and death in hospital from secondary care data. Results From 2009 to 2014, proportions with a primary care record of palliative care increased for COPD from 13.6% to 21.2%; dementia from 20.9% to 40.7%; and heart failure from 12.6% to 21.2%; but remained substantially lower than for cancer (57.6% to 61.9%). Median days before death of recording improved for COPD (145 to 224) and dementia (44 to 209); but not for heart failure (168.5 to 153) and cancer (123 to 114). Trends in hospital deaths were not consistently downward, although the proportions of patients dying in hospital were lower in the last period compared to the first. Conclusions Recording of a palliative care approach for non-cancer conditions has increased since the introduction of the UK End of Life Care Strategy, but remains inadequate