The association between ethnicity, socioeconomic deprivation and receipt of hospital-based palliative care for people with Covid-19: A dual centre service evaluation.

BACKGROUND: People from ethnic minority groups and deprived socioeconomic backgrounds have worse outcomes from COVID-19. AIM: To examine associations between ethnicity and deprivation with timing of palliative care referral for inpatients with COVID-19. DESIGN: Service evaluation of consecutive patients with COVID-19 referred to palliative care. Sociodemographic (including age, sex, Index of Multiple Deprivation, ethnicity coded as White/non-White) and clinical variables were described. The primary outcome was timing of referral to palliative care. Associations between ethnicity and socioeconomic deprivation with the primary outcome were explored using multivariable regression. SETTING/PARTICIPANTS: Patients with COVID-19 referred to a hospital palliative care service across two London hospitals February-May 2020. RESULTS: A total of 334 patients were included. 119 (36%) were from a non-White ethnic group; most commonly Black British (77, 23%) and Asian British (26, 8%). A longer time between admission and palliative care referral was associated with male gender (IRR 1.23, 95% CI 1.14-1.34) and lower levels of socioeconomic deprivation (IRR 1.61, 95% CI 1.36-1.90) but not ethnicity (IRR = 0.96, 95% CI 0.87-1.06). CONCLUSIONS: This large service evaluation showed no evidence that patients from ethnic minority or more deprived socioeconomic groups had longer time to palliative care referral. Ongoing data monitoring is essential for equitable service delivery.

COVID-19 and the multidisciplinary care of patients with lung cancer: an evidence-based review and commentary.

Delivering lung cancer care during the COVID-19 pandemic has posed significant and ongoing challenges. There is a lack of published COVID-19 and lung cancer evidence-based reviews, including for the whole patient pathway. We searched for COVID-19 and lung cancer publications and brought together a multidisciplinary group of stakeholders to review and comment on the evidence and challenges. A rapid review of the literature was undertaken up to 28 October 2020, producing 144 papers, with 113 full texts screened. We focused on new primary data collection (qualitative or quantitative evidence) and excluded case reports, editorials and commentaries. Following exclusions, 15 published papers were included in the review and are summarised. They included one qualitative paper and 14 quantitative studies (surveys or cohort studies), with a total of 2295 lung cancer patients data included (mean study size 153 patients; range 7-803). Review of current evidence and commentary included awareness and help-seeking; lung cancer screening; primary care assessment and referral; diagnosis and treatment in secondary care, including oncology and surgery; patient experience and palliative care. Cross-cutting themes and challenges were identified using qualitative methods for patients, healthcare professionals and service delivery, with a clear need for continued studies to guide evidence-based decision-making.

The impact of and response to the COVID-19 pandemic on a hospital palliative care team.

London was at the forefront of the COVID-19 pandemic in the UK, with an exponential rise in hospital admissions from March 2020. This case study appraises the impact on and response of a hospital palliative care service based in a large inner-city teaching hospital. Referrals increased from a mean of 39 to 75 per week; deaths from 13 to 52 per week. Multiple actions were taken by the team to manage the surge in referrals, which have been categorised based on the 4S model: systems, space, stuff and staff. Several lessons are highlighted: need for flexible and responsive staffing over the 7-day week; implementing clear, accessible clinical guidance supported by ward-based teaching; benefits of integrating clinical practice with research; and the importance of maintaining team well-being and camaraderie to sustain change. Further evaluation is needed of the differential impact of changes made to inform service planning for future pandemics.

The Role and Response of Palliative Care and Hospice Services in Epidemics and Pandemics: A Rapid Review to Inform Practice During the COVID-19 Pandemic.

Cases of coronavirus disease 2019 (COVID-19) are escalating rapidly across the globe, with the mortality risk being especially high among those with existing illness and multimorbidity. This study aimed to synthesize evidence for the role and response of palliative care and hospice teams to viral epidemics/pandemics and inform the COVID-19 pandemic response. We conducted a rapid systematic review according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines in five databases. Of 3094 articles identified, 10 were included in this narrative synthesis. Included studies were from West Africa, Taiwan, Hong Kong, Singapore, the U.S., and Italy. All had an observational design. Findings were synthesized using a previously proposed framework according to systems (policies, training and protocols, communication and coordination, and data), staff (deployment, skill mix, and resilience), space (community provision and use of technology), and stuff (medicines and equipment as well as personal protective equipment). We conclude that hospice and palliative services have an essential role in the response to COVID-19 by responding rapidly and flexibly; ensuring protocols for symptom management are available, and training nonspecialists in their use; being involved in triage; considering shifting resources into the community; considering redeploying volunteers to provide psychosocial and bereavement care; facilitating camaraderie among staff and adopting measures to deal with stress; using technology to communicate with patients and carers; and adopting standardized data collection systems to inform operational changes and improve care.

Characteristics, Symptom Management, and Outcomes of 101 Patients With COVID-19 Referred for Hospital Palliative Care.

Hospital palliative care is an essential part of the COVID-19 response but data are lacking. We identified symptom burden, management, response to treatment, and outcomes for a case series of 101 inpatients with confirmed COVID-19 referred to hospital palliative care. Patients (64 men, median [interquartile range {IQR}] age 82 [72-89] years, Elixhauser Comorbidity Index 6 [2-10], Australian-modified Karnofsky Performance Status 20 [10-20]) were most frequently referred for end-of-life care or symptom control. Median [IQR] days from hospital admission to referral was 4 [1-12] days. Most prevalent symptoms (n) were breathlessness (67), agitation (43), drowsiness (36), pain (23), and delirium (24). Fifty-eight patients were prescribed a subcutaneous infusion. Frequently used medicines (median [range] dose/24 hours) were opioids (morphine, 10 [5-30] mg; fentanyl, 100 [100-200] mcg; alfentanil, 500 [150-1000] mcg) and midazolam (10 [5-20] mg). Infusions were assessed as at least partially effective for 40/58 patients, while 13 patients died before review. Patients spent a median [IQR] of 2 [1-4] days under the palliative care team, who made 3 [2-5] contacts across patient, family, and clinicians. At March 30, 2020, 75 patients had died; 13 been discharged back to team, home, or hospice; and 13 continued to receive inpatient palliative care. Palliative care is an essential component to the COVID-19 response, and teams must rapidly adapt with new ways of working. Breathlessness and agitation are common but respond well to opioids and benzodiazepines. Availability of subcutaneous infusion pumps is essential. An international minimum data set for palliative care would accelerate finding answers to new questions as the COVID-19 pandemic develops.

Randomised, double-blind, multicentre, mixed-methods, dose-escalation feasibility trial of mirtazapine for better treatment of severe breathlessness in advanced lung disease (BETTER-B feasibility).

New treatments are required for severe breathlessness in advanced disease. We conducted a randomised feasibility trial of mirtazapine over 28 days in adults with a modified medical research council breathlessness scale score ≥3. Sixty-four patients were randomised (409 screened), achieving our primary feasibility endpoint of recruitment. Most patients had COPD or interstitial lung disease; 52 (81%) completed the trial. There were no differences between placebo and mirtazapine in tolerability or safety, and blinding was maintained. Worst breathlessness ratings at day 28 (primary clinical activity endpoint) were, 7.1 (SD 2.3, placebo) and 6.3 (SD 1.8, mirtazapine). A phase III trial of mirtazapine is indicated. Trial registration: ISRCTN 32236160; European Clinical Trials Database (EudraCT no: 2015-004064-11).

What is the evidence for mirtazapine in treating cancer-related symptomatology? A systematic review.

PURPOSE: Cancer patients often experience multiple distressing symptoms which are challenging to manage. It would therefore be helpful to find a treatment that alleviates more than one symptom, to avoid polypharmacy: mirtazapine has been used in several studies for this purpose. The objective of this study was to assess the effectiveness and safety of mirtazapine in alleviating one or more frequently encountered cancer-related symptoms. METHODS: Systematic review of clinical trials in English or French. Eight databases were searched. Included studies assessed the effectiveness of mirtazapine in alleviating one or more frequently encountered cancer-related symptoms. Comparator and validated assessment tools were required. Studies were independently appraised by two investigators before data synthesis. RESULTS: The search yielded 1898 references, from which we identified 12 relevant articles evaluating highly heterogeneous outcomes. These were two randomised-controlled (RCTs), three non-randomised controlled, and seven non-randomised non-controlled trials. In total, 392 participants were included and 185 were in RCTs. No study assessed the effectiveness of mirtazapine in alleviating symptoms at the same time, but some considered more than one symptom. Overall, the data was of poor quality, limited by small sample size and bias. However, mirtazapine showed effectiveness in treating depression, anxiety, sleep disorders, emesis and neuropathic pain. Across all studies, mirtazapine is safe to use, with drowsiness and dizziness the most common side-effects. CONCLUSION: Study design and small sample sizes limit the ability to interpret results. Trials to assess the impact of mirtazapine or other medicines in alleviating multiple symptoms would be valuable.

A brief, patient- and proxy-reported outcome measure in advanced illness: Validity, reliability and responsiveness of the Integrated Palliative care Outcome Scale (IPOS).

BACKGROUND: Few measures capture the complex symptoms and concerns of those receiving palliative care. AIM: To validate the Integrated Palliative care Outcome Scale, a measure underpinned by extensive psychometric development, by evaluating its validity, reliability and responsiveness to change. DESIGN: Concurrent, cross-cultural validation study of the Integrated Palliative care Outcome Scale - both (1) patient self-report and (2) staff proxy-report versions. We tested construct validity (factor analysis, known-group comparisons, and correlational analysis), reliability (internal consistency, agreement, and test-retest reliability), and responsiveness (through longitudinal evaluation of change). SETTING/PARTICIPANTS: In all, 376 adults receiving palliative care, and 161 clinicians, from a range of settings in the United Kingdom and Germany. RESULTS: We confirm a three-factor structure (Physical Symptoms, Emotional Symptoms and Communication/Practical Issues). Integrated Palliative care Outcome Scale shows strong ability to distinguish between clinically relevant groups; total Integrated Palliative care Outcome Scale and Integrated Palliative care Outcome Scale subscale scores were higher - reflecting more problems - in those patients with 'unstable' or 'deteriorating' versus 'stable' Phase of Illness (F = 15.1, p < 0.001). Good convergent and discriminant validity to hypothesised items and subscales of the Edmonton Symptom Assessment System and Functional Assessment of Cancer Therapy-General is demonstrated. The Integrated Palliative care Outcome Scale shows good internal consistency (α = 0.77) and acceptable to good test-retest reliability (60% of items kw > 0.60). Longitudinal validity in form of responsiveness to change is good. CONCLUSION: The Integrated Palliative care Outcome Scale is a valid and reliable outcome measure, both in patient self-report and staff proxy-report versions. It can assess and monitor symptoms and concerns in advanced illness, determine the impact of healthcare interventions, and demonstrate quality of care. This represents a major step forward internationally for palliative care outcome measurement.

To What Extent Do the NRS and CRQ Capture Change in Patients' Experience of Breathlessness in Advanced Disease? Findings From a Mixed-Methods Double-Blind Randomized Feasibility Trial.

CONTEXT: Chronic or refractory breathlessness is common and distressing. To evaluate new treatments, outcome measures that capture change in patients' experience are needed. OBJECTIVES: To explore the extent to which the numerical rating scale (NRS) worst and average, and the Chronic Respiratory Questionnaire capture change in patients' experience during a trial of mirtazapine for refractory breathlessness. METHODS: Convergent mixed-methods design embedded within a randomized trial comprising 1) semi-structured qualitative interviews (considered to be the gold standard) and 2) outcome measure data collected pre- and post-intervention. Data were integrated, exploring examples where findings agreed and disagreed. Adults with advanced cancer, chronic obstructive pulmonary disease, interstitial lung disease, or chronic heart failure, with a modified Medical Research Council dyspnea scale grade 3 or 4 were recruited from three U.K. sites. RESULTS: Data were collected for 22 participants. Eleven had a diagnosis of chronic obstructive pulmonary disease, eight interstitial lung disease, two chronic heart failure, and one cancer. Median age was 71 (56-84) years. Sixteen participants were men. Changes in the qualitative data were commonly captured in the NRS (worst and average) and the Chronic Respiratory Questionnaire. The NRS worst captured change most frequently. Improvement in the emotional domain was associated with physical changes, improved confidence, and control. CONCLUSION: This study found that the NRS using the question "How bad has your breathlessness felt at its worst over the past 24 hours?" captured change across multiple domains, and therefore may be an appropriate primary outcome measure in trials in this population. Future work should confirm the construct validity of this question.

Control and Context Are Central for People With Advanced Illness Experiencing Breathlessness: A Systematic Review and Thematic Synthesis.

CONTEXT: Breathlessness is common and distressing in advanced illness. It is a challenge to assess, with few effective treatment options. To evaluate new treatments, appropriate outcome measures that reflect the concerns of people experiencing breathlessness are needed. OBJECTIVES: The objective of this study was to systematically review and synthesize the main concerns of people with advanced illness experiencing breathlessness to guide comprehensive clinical assessment and inform future outcome measurement in clinical practice and research. METHODS: This is a systematic review following Preferred Reporting Items for Systematic Reviews and Meta-Analyses methodology. MEDLINE (1946-2017), PsycINFO (1806-2017), and EMBASE (1974-2017), as well as key journals, gray literature, reference lists, and citation searches, identified qualitative studies exploring the concerns of people living with breathlessness. Included studies were quality-assessed using the Critical Appraisal Skills Program checklist and analyzed using thematic synthesis. RESULTS: We included 38 studies with 672 participants. Concerns were identified across six domains of "total" breathlessness: physical, emotional, spiritual, social, control, and context (chronic and episodic breathlessness). Four of these have been previously identified in the concept of "total dyspnea." Control and context have been newly identified as important, particularly in their influence on coping and help-seeking behavior. The importance of social participation, impact on relationships, and loss of perceived role within social and spiritual domains also emerged as being significant to individuals. CONCLUSION: People with advanced illness living with breathlessness have concerns in multiple domains, supporting a concept of "total breathlessness." This adapted model can help to guide comprehensive clinical assessment and inform future outcome measurement in clinical practice and research.

Use of mirtazapine in patients with chronic breathlessness: A case series.

BACKGROUND: Breathlessness remains a common and distressing symptom in people with advanced disease with few effective treatment options. Repurposing of existing medicines has been effective in other areas of palliative care, for example, antidepressants to treat pain, and offers an opportunity to deliver improved symptom control in a timely manner. Previous case series have shown reduced breathlessness following the use of sertraline (a selective serotonin reuptake inhibitor) in people with chronic obstructive pulmonary disease. CASES: Six cases where mirtazapine, a noradrenergic and specific serotonergic antidepressant, was used to treat chronic breathlessness in advanced lung disease. Case management: All cases received mirtazapine at a starting dose of 15 mg, prescribed under the care of their primary care physician. Cases had been receiving mirtazapine for a variable time period (2 weeks to 5 months) at the time of the interviews. Case outcome: All cases reported less breathlessness and being able to do more. They described feeling more in control of their breathing, and being able to recover more quickly from episodes of breathlessness. Some cases also reported beneficial effects on anxiety, panic, appetite and sleep. No adverse effects were reported. DISCUSSION: Patients with chronic breathlessness in this case series reported benefits during mirtazapine treatment. To determine the effectiveness of mirtazapine in alleviating breathlessness and improving quality of life in chronic lung disease, blinded randomised trials are warranted.

Influences on Care Preferences of Older People with Advanced Illness: A Systematic Review and Thematic Synthesis.

OBJECTIVES: To determine and explore the influences on care preferences of older people with advanced illness and integrate our results into a model to guide practice and research. DESIGN: Systematic review using Medline, Embase, PsychINFO, Web of Science, and OpenGrey databases from inception to February 2017 and reference and citation list searching. Included articles investigated influences on care preference using qualitative or quantitative methodology. Thematic synthesis of qualitative articles and narrative synthesis of quantitative articles were undertaken. SETTING: Hospital and community care settings. PARTICIPANTS: Older adults with advanced illness, including people with specific illnesses and markers of advanced disease, populations identified as in the last year of life, or individuals receiving palliative care (N = 15,164). MEASUREMENTS: The QualSys criteria were used to assess study quality. RESULTS: Of 12,142 search results, 57 articles were included. Family and care context, illness, and individual factors interact to influence care preferences. Support from and burden on family and loved ones were prominent influences on care preferences. Mechanisms by which preferences are influenced include the process of trading-off between competing priorities, making choices based on expected outcome, level of engagement, and individual ability to form and express preferences. CONCLUSION: Family is particularly important as an influence on care preferences, which are influenced by complex interaction of family, individual, and illness factors. To support preferences, clinicians should consider older people with illnesses and their families together as a unit of care.

Palliative care and management of troublesome symptoms for people with chronic obstructive pulmonary disease.

People with advanced chronic obstructive pulmonary disease (COPD) have distressing physical and psychological symptoms, often have limited understanding of their disease, and infrequently discuss end-of-life issues in routine clinical care. These are strong indicators for expert multidisciplinary palliative care, which incorporates assessment and management of symptoms and concerns, patient and caregiver education, and sensitive communication to elicit preferences for care towards the end of life. The unpredictable course of COPD and the difficulty of predicting survival are barriers to timely referral and receipt of palliative care. Early integration of palliative care with respiratory, primary care, and rehabilitation services, with referral on the basis of the complexity of symptoms and concerns, rather than prognosis, can improve patient and caregiver outcomes. Models of integrated working in COPD could include: services triggered by troublesome symptoms such as refractory breathlessness; short-term palliative care; and, in settings with limited access to palliative care, consultation only in specific circumstances or for the most complex patients.

Understanding patterns and factors associated with place of death in patients with end-stage kidney disease: A retrospective cohort study.

BACKGROUND: Meeting place-of-death preferences is an important measure of the quality of end-of-life care. Systematic review shows that 42% of end-stage kidney disease patients prefer home death. Little research has been undertaken on place of death. AIM: To understand patterns of place of death in patients with end-stage kidney disease known in one UK renal unit. DESIGN: A retrospective cohort study of all patients with chronic kidney disease stage 4-5, age ⩾75 and known to one UK renal unit, who died between 2006 and 2012. Patients were categorised into three management pathways: haemodialysis, conservative and pre-dialysis. RESULTS: A total of 321 patients (mean age, 82.7; standard deviation, 5.21) died (61.7% male). In all, 62.9% died in hospital (95% confidence interval, 57.5%-68.1%), 21.8% died in their usual place of residence (95% confidence interval, 17.5%-26.6%) and 15.3% died in an inpatient palliative care unit (95% confidence interval, 11.6%-19.5%). Management pathway and living circumstances were most strongly associated with place of death. Patients on the conservative pathway had four times the odds of dying out of hospital (odds ratio, 4.0; 95% confidence interval, 2.1-7.5; p < 0.01). Patients living alone were less likely to die out of hospital (odds ratio, 0.3; 95% confidence interval, 0.1-0.6; p < 0.01). There were also changes in place of death over time, with more patients dying out of hospital in 2012 compared to 2006 (odds ratio, 3.1; 95% confidence interval, 1.0-9.7; p < 0.05). CONCLUSION: Most patients with end-stage kidney disease die in hospital, but patients managed without dialysis are significantly more likely to die outside of hospital. Planning ahead is key to be able to meet preference for place of death.

Discovering the hidden benefits of cognitive interviewing in two languages: The first phase of a validation study of the Integrated Palliative care Outcome Scale.

BACKGROUND: The Integrated Palliative care Outcome Scale is a newly developed advancement of the Palliative care Outcome Scale. It assesses patient-reported symptoms and other concerns. Cognitive interviewing is recommended for questionnaire refinement but not adopted widely in palliative care research. AIM: To explore German- and English-speaking patients' views on the Integrated Palliative care Outcome Scale with a focus on comprehensibility and acceptability, and subsequently refine the questionnaire. METHODS: Bi-national (United Kingdom/Germany) cognitive interview study using 'think aloud' and verbal probing techniques. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis and pre-defined categories. Results from both countries were collated and discussed. The Integrated Palliative care Outcome Scale was then refined by consensus. SETTING/PARTICIPANTS: Purposely sampled patients from four palliative care teams in palliative care units, general hospital wards and in the community. RESULTS: A total of 15 German and 10 UK interviews were conducted. Overall, comprehension and acceptability of the Integrated Palliative care Outcome Scale were good. Identified difficulties comprised the following: (1) comprehension problems with specific terms (e.g. 'mouth problems') and length of answer options; (2) judgement difficulties, for example, due to the 3-day recall for questions; and (3) layout problems. Combining the results from both countries (e.g. regarding 'felt good about yourself') and discussing them from both languages' perspectives resulted in wider consideration of the items' meaning, enabling more detailed refinement. CONCLUSION: Cognitive interviewing proved valuable to increase face and content validity of the questionnaire. The concurrent approach in two languages - to our knowledge the first such approach in palliative care - benefited the refinement. Psychometric validation of the refined Integrated Palliative care Outcome Scale is now underway.

Diagnosis of depression in patients receiving specialist community palliative care: does using a single screening question identify depression otherwise diagnosed by clinical interview?

BACKGROUND: Depression affects a quarter of palliative patients and is associated with reduced quality of life. Screening for psychological problems at key points in the patients' pathway is recommended but there is no consensus as to how to do this. AIMS: The study's aim was to assess the efficacy of a screening question for depression against a semistructured interview in patients referred to a specialist community palliative care team. METHODS: Fifty community palliative care patients were assessed using a single question: "Have you felt depressed, most of the day, nearly every day for two or more weeks?" Results were compared with assessment using the validated Mini International Neuropsychiatric Interview (MINI). RESULTS: Sensitivity of the single question was 0.8 and specificity was 0.85. The positive predictive value was 0.57 and the negative predictive value was 0.94. CONCLUSION: The screening question was shown to have acceptable sensitivity and specificity in a small sample of community palliative care patients. It is likely to be most useful to accurately identify those who are not depressed and identify those patients who need a more in-depth assessment of their mood.

Life experiences and expectations of young women in Uganda.

PURPOSE: This study aims to explore the life experiences and expectations of young women of Busoga in Eastern Uganda. DESIGN/METHODOLOGY/APPROACH: Using qualitative methods, a small group of young women drew, wrote stories and made videos together. The data which emerged from this exercise were analysed alongside the researcher's own observations. FINDINGS: Basoga society's main expectation of young women is that they will work in the home. Yet, young women describe very different ideas of what they want from their lives; this includes a desire for access to a good educational experience, and different expectations for family life than cultural norms. They find, however, that there are many barriers to meeting those expectations. ORIGINALITY/VALUE: The study is important because it acknowledges and forefronts Ugandan young women's life expectations. Typically, development focuses on "outsider" considerations rather than "insider" views and desires. The desires of the marginalised, such as young women in Africa, are a particularly neglected subject. There is a need for continued efforts to explore and include young women's experiences and expectations countering gender inequality and as part of ongoing gender empowerment and sexual health strategies.