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.

Symptoms and anxiety predict declining health-related quality of life in multiple myeloma: A prospective, multi-centre longitudinal study.

BACKGROUND: Patients with multiple myeloma, an incurable haematological cancer, often receive palliative care only late in their trajectory. Criteria for early referral are lacking. AIM: To identify which patients might benefit from early integration, by identifying trajectories of health-related quality of life and the determinants for declining or poor Health related quality of life . DESIGN: Prospective, longitudinal cohort study. PARTICIPANTS: Multiple myeloma patients at all stages (newly diagnosed, first-line or second-line treatment, early or later treatment-free interval, refractory disease) from in- and outpatient units at 14 hospitals in England were recruited. In addition to clinical information and standardised Health related quality of life and psychological aspects, the Myeloma Patient Outcome Scale (MyPOS) measured palliative care concerns. RESULTS: A total of 238 patients were recruited, on average 3.5 years ( SD: 3.4) post-diagnosis. Latent mixture growth models identified four Health related quality of life trajectories. Classes 3 and 4 represent trajectories of stable poor Health related quality of life or declining Health related quality of life over an 8-month period. The strongest predictors of poor outcome at the end of follow-up were general symptom level (odds ratio (OR): 1.3, 95% CI: 1.0-1.6, p = 0.028), presence of clinically relevant anxiety (OR: 1.2, 95% confidence interval (CI): 1.0-1.4, p = 0.019), and presence of pain (OR: 1.02, 95% CI: 1.0-1.1, p = 0.018), all being more predictive than demographic or clinical characteristics. CONCLUSION: General symptom level, pain and presence of anxiety predict declining Health related quality of life in multiple myeloma. Identification of patients with palliative care needs should focus on assessing patient-reported symptoms and psychosocial well-being for identifying those at risk of deterioration.

The Myeloma Patient Outcome Scale is the first quality of life tool developed for clinical use and validated in patients with follicular lymphoma.

OBJECTIVES: The development of novel agents and an ageing population has led to an increasing number of patients with follicular lymphoma (FL) living longer with their disease. Health-related quality of life (HRQOL) is a priority for patients and should guide clinical decisions. The Myeloma Patient Outcome Scale (MyPOS), originally developed for myeloma, was validated in a cross-sectional survey recruiting 124 FL patients. METHODS: Content and construct validity, structural validity using confirmatory factor analyses, reliability and acceptability were evaluated. RESULTS: Three subscales were indicated: symptoms and function, emotional response, and healthcare support. MyPOS symptom and function scores were higher (worse) in participants with poorer ECOG performance status (F=26.2, P<.000) and discriminated between patients on and off treatment. Good convergent and discriminant validity in comparison to the EORTC-QLQ-C30 and FACT-Lym were demonstrated. Internal consistency was good; α coefficient 0.70-0.95 for the total MyPOS score and subscales. CONCLUSION: The MyPOS is valid, reliable and acceptable, and can be used to support clinical care of FL patients. This is the first measurement tool developed specially for use in clinical practice that has been validated for use in people with FL. Further longitudinal validation is now required to support its use in outcome measurement.

The impact of disease-related symptoms and palliative care concerns on health-related quality of life in multiple myeloma: a multi-centre study.

BACKGROUND: Multiple myeloma, the second most common haematological cancer, remains incurable. Its incidence is rising due to population ageing. Despite the impact of the disease and its treatment, not much is known on who is most in need of supportive and palliative care. This study aimed to (a) assess symptom severity, palliative care concerns and health-related quality of life (HRQOL) in patients with multiple myeloma, and (b) to determine which factors are associated with a lower quality of life. We further wanted to know (c) whether general symptom level has a stronger influence on HRQOL than disease characteristics. METHODS: This multi-centre cross-sectional study sampled two cohorts of patients with multiple myeloma from 18 haematological cancer centres in the UK. The Myeloma Patient Outcome Scale (MyPOS) was used to measure symptoms and concerns. Measures of quality of life included the EORTC QLQ-C30, its myeloma module and the EuroQoL EQ-5D. Data were collected on socio-demographic, disease and treatment characteristics and phase of illness. Point prevalence of symptoms and concerns was determined. Multiple regression models quantified relationships between independent factors and the MyPOS, EORTC global quality of life item and EQ5D Index. RESULTS: Five-hundred-fifty-seven patients, on average 3.5 years (SD: 3.4) post-diagnosis, were recruited. 18.2 % had newly diagnosed disease, 47.9 % were in a treatment-free interval and 32.7 % had relapsed/progressive disease phase. Patients reported a mean of 7.2 symptoms (SD: 3.3) out of 15 potential symptoms. The most common symptoms were pain (72 %), fatigue (88 %) and breathlessness (61 %). Those with relapsed/progressive disease reported the highest mean number of symptoms and the highest overall palliative care concerns (F = 9.56, p < 0.001). Factors associated with high palliative care concerns were a general high symptom level, presence of pain, anxiety, low physical function, younger age, and being in the advanced stages of disease. CONCLUSION: Patients with multiple myeloma have a high symptom burden and low HRQOL, in the advanced and the earlier stages of disease. Identification of patients in need of supportive care should focus on assessing patient-reported outcomes such as symptoms and functioning regularly in clinical practice, complementary to traditional biomedical markers.

Prevalence of symptoms in patients with multiple myeloma: a systematic review and meta-analysis.

OBJECTIVES: Multiple myeloma (MM) is an incurable haematological disease. Due to novel agents, overall survival has improved in this group, yet there are no systematic reviews to understand the symptom profiles resulting from disease and treatment-related toxicities. We aimed to synthesise data on the prevalence of symptoms in patients with MM. METHODS: A systematic database and grey literature search were conducted in six databases. Random-effects meta-analysis with inverse variance weighting to pool prevalence data was performed. RESULTS: Thirty-six studies were included of which 34 studies (N = 3023) provided data for meta-analysis. Twenty-seven distinct symptoms were reported, with the majority of studies focusing on pain (n = 27), fatigue (n = 19) and problems with functioning (n = 15). The most prevalent symptoms were fatigue (98.8%, 95% CI 98.1-99.2%), pain (73%, 39.9-91.7), constipation (65.2%, 22.9-92.2) and tingling in the hands/feet with 53.4% (0.4-99.7). The most common problems were decreased physical functioning (98.9%, 98.2-99.3), decreased cognitive functioning (80.2%, 40-96.1) and financial difficulties (78.4%, 39.1-95.4). These problems were present in newly diagnosed to advanced disease stage. CONCLUSIONS: Optimal quality of life and good symptom management in this incurable disease can only be achieved by routinely assessing symptoms throughout the disease trajectory.

Improving the assessment of quality of life in the clinical care of myeloma patients: the development and validation of the Myeloma Patient Outcome Scale (MyPOS).

BACKGROUND: Multiple myeloma is an incurable cancer with a rising incidence globally. Less toxic treatments are increasingly available, so patients are living longer and treatment decisions are increasingly guided by QOL concerns. There is no QOL assessment tool designed specifically for use in the clinical care of people with myeloma. This study aimed to develop and test the psychometric properties of a new myeloma-specific QOL questionnaire designed specifically for use in the clinical setting - the MyPOS. METHODS: The MyPOS was developed using findings from a previously reported literature review and qualitative study. The prototype MyPOS was pretested using cognitive interviews in a purposive sample of myeloma patients and refined prior to field testing. The psychometric properties of the MyPOS were evaluated in a multi-centre, cross sectional survey of myeloma patients recruited from 14 hospital trusts across England. RESULTS: The prototype MyPOS contained 33 structured and open questions. These were refined using cognitive interviews with 12 patients, and the final MyPOS contained 30 items taken forward for field-testing. The cross-sectional survey recruited 380 patients for the MyPOS validation. Mean time to complete was 7 minutes 19 seconds with 0.58% missing MyPOS items overall. Internal consistency was high (α = 0.89). Factor analysis confirmed three subscales: Symptoms & Function; Emotional Response and Healthcare Support. MyPOS total scores were higher (worse QOL) in those with active disease compared to those in the stable or plateau phase (F = 11.89, p < 0.001) and were worse in those currently receiving chemotherapy (t = 3.42, p = 0.001). Scores in the Symptoms & Function subscale were higher (worse QOL) in those with worse ECOG performance status (F = 31.33, p < 0.001). Good convergent and discriminant validity were demonstrated. CONCLUSIONS: The MyPOS is the first myeloma-specific QOL questionnaire designed specifically for use in the clinical setting. The MyPOS is based on qualitative enquiry and the issues most important to patients. It is a brief, comprehensive and acceptable tool that is reliable and valid on psychometric testing. The MyPOS can now be used to support clinical decision making in the routine care of myeloma patients.

Understanding what matters most to people with multiple myeloma: a qualitative study of views on quality of life.

BACKGROUND: Multiple myeloma is an incurable haematological cancer that affects physical, psychological and social domains of quality of life (QOL). Treatment decisions are increasingly guided by QOL issues, creating a need to monitor QOL within clinical practice. The development of myeloma-specific QOL questionnaires has been limited by a paucity of research to fully characterise QOL in this group. Aims of the present study are to (1) explore the issues important to QOL from the perspective of people with multiple myeloma, and (2) explore the views of patients and clinical staff on existing QOL questionnaires and their use in clinical practice. METHODS: The 'Issues Interviews' were semi-structured qualitative interviews to explore the issues important to QOL in a purposive sample of myeloma patients (n = 20). The 'Questionnaire Interviews' were semi-structured qualitative interviews in a separate purposive sample of myeloma patients (n = 20) to explore views on existing QOL questionnaires and their clinical use. Two patient focus groups (n = 7, n = 4) and a focus group of clinical staff (n = 6) complemented the semi-structured interviews. Thematic content analysis resulted in the development of a theoretical model of QOL in myeloma. RESULTS: Main themes important to QOL were Biological Status, Treatment Factors, Symptoms Status, Activity & Participation, Emotional Status, Support Factors, Expectations, Adaptation & Coping and Spirituality. Symptoms had an indirect effect on QOL, only affecting overall QOL if they impacted upon Activity & Participation, Emotional Status or Support Factors. This indirect relationship has implications for the design of QOL questionnaires, which often focus on symptom status. Health-service factors emerged as important but are often absent from QOL questionnaires. Sexual function was important to patients and difficult for clinicians to discuss, so inclusion in clinical QOL tools may flag hidden problems and facilitate better care. Patients and staff expressed preferences for questionnaires to be no more than 2 pages long and to include a mixture of structured and open questions to focus the goals of care on what is most important to patients. CONCLUSION: Existing QOL questionnaires developed and validated for use in myeloma do not capture all that is important to patients and may not be well suited to clinical use.

Meanings of happiness among two ethnic groups living with advanced cancer in south London: a qualitative study.

OBJECTIVE: Happiness is a central component in quality of life but little is known about its meanings among people living with an advanced disease and those from diverse communities. This study explores and compares, for the first time, the centrality and interpretations of happiness across two cultural groups living with advanced cancer. METHODS: Semi-structured interviews among 26 Black Caribbean and 19 White British cancer patients were conducted in hospital and home settings. RESULTS: Thirty eight participants volunteered views on happiness, which were related to four main themes: empty lives, a theme associated with lives devoid of contentment; happiness and the physical form principally, associated with the absence of distressing symptoms; 'love and affection' associated with family and friends; and 'realising personal meaning in life', most common among the Black Caribbean participants and related to God, prayer and the sacred world. The presence of cancer pain even when refractory did not preclude manifestations of happiness in this domain. CONCLUSIONS: We identified that happiness was central to many patients' quality of life during advanced cancer. Moreover, happiness was multidimensional and at times culturally patterned. We recommend that health and social care professionals increase their awareness and skills-set in relation to exploring happiness. Further, we recommend greater efforts are invested in cultural relativism to service the physical, psychological, social and spiritual issues that contribute towards moments of happiness among diverse communities.

What issues matter most to people with multiple myeloma and how well are we measuring them? A systematic review of quality of life tools.

INTRODUCTION: Treatment advances in multiple myeloma have increased expected survival from months to years for some patients. Alongside improved survival emerges a need to better understand and measure health-related quality of life (HRQOL), both in research and clinical settings. OBJECTIVES: (i) Identify HRQOL tools validated for use in myeloma; (ii) identify issues important to HRQOL from the point of view of patients with myeloma; (iii) describe the measurement properties of each HRQOL tool; (iv) evaluate the content validity of HRQOL tools in terms of their ability to capture all issues important to patients and (v) explore the suitability of each HRQOL tool for use in different settings. METHOD: Systematic literature review of six databases with no limits by date or language. RESULTS: Thirty-nine studies reported validation of 13 HRQOL instruments. Seven studies identified issues important to HRQOL from the patients' perspective. No instrument was comprehensive to all issues important to patients. The EORTC-QLQ-C30 and MY24 have undergone the most comprehensive psychometric validation. Most validation occurred in trial patients and not clinically representative groups. No studies evaluated clinical utility of tools alongside routine practice. CONCLUSION: The best existing HRQOL tools are designed predominantly for use in research. Reliable, valid and responsive tools exist for this purpose, but may miss issues important to patients. The design of HRQOL measures should be guided by intended utility, whether for research or clinical practice, and further validation of HRQOL tools in clinically representative groups is needed. Development and validation of HRQOL tools for clinical use may be of value.

'The greatest thing in the world is the family': the meaning of social support among black Caribbean and white British patients living with advanced cancer.

PURPOSE: Little is known about the perceptions and meanings of social support among black and minority ethnic groups living with advanced cancer in the UK. The aim of this study was to explore social support networks and their meaning among Black Caribbean and White British patients living with advanced cancer. METHOD: Semi-structured interviews were conducted with 26 Black Caribbean and 19 White British cancer patients and analysed using the framework approach. RESULTS: In all, 25 of 26 Black Caribbean and 18 of 19 White British participants volunteered views on the presence of social support in their lives. The presence of a spouse or partners was an indispensable feature within the social support networks in both ethnic groups. More Black Caribbean than White British participants referred to the presence of social networks made through their church communities as being a source of practical and emotional support. CONCLUSIONS: We recommend that when health and social-care professionals perform an assessment interview with patients from cultural backgrounds different to their own, opportunities should be made for patients to express information about their social support networks. This will help them to better understand their place alongside statutory services. Spouses and partners should be given greater recognition of their contribution in order to continue with their important role.

Evaluation of a new model of short-term palliative care for people severely affected with multiple sclerosis: a randomised fast-track trial to test timing of referral and how long the effect is maintained.

AIMS: In this randomised fast-track phase II trial, the authors examined (1) whether the timing of referral to short-term palliative care (PC) affected selected outcomes, and (2) the potential staff-modifying effect of the short-term PC intervention (whether the effects were sustained over time after PC was withdrawn). METHODS: PC comprised a multiprofessional PC team that provided, on average, three visits, with all care completed by 6 weeks. Recruitment commenced in August 2004 and continued for 1 year. Follow-up was performed for 6 months in both groups. Outcomes were a composite measure of five key symptoms (pain, nausea, vomiting, mouth problems and sleeping difficulty) using the Palliative care Outcome Scale-MS Symptom Scale, and care giver burden was measured using the Zarit (Care Giver) Burden Interview (ZBI). RESULTS: 52 patients severely affected by multiple sclerosis were randomised to receive PC either immediately (fast-track group) or after 12 weeks (control group). Patients had a high level of disability (mean Expanded Disability Status Scale: 7.7; median: 8; SD: 1). Following PC, there was an improvement in Palliative care Outcome Scale-MS Symptom Scale score and ZBI score. A higher rate of improvement in ZBI score was seen in the fast-track group. After withdrawal of PC, effects were maintained at 12 weeks, but not at 24 weeks. CONCLUSIONS: Receiving PC earlier has a similar effect on reducing symptoms but greater effects on reducing care giver burden, compared to later referral. In this phase II trial, the authors lacked the power to detect small differences. The effect of PC is maintained for 6 weeks after withdrawal but then appears to wane.

How common are palliative care needs among older people who die in the emergency department?

OBJECTIVE: To determine the prevalence and nature of palliative care needs in people aged 65 years or more (65+) who die in emergency departments (EDs). METHODS: This was a retrospective analysis of routine hospital data from two EDs in South London. Patients aged 65+ living in the hospitals' catchment area who died in the ED during a 1 year period (2006-2007) were included. Palliative care needs identified by diagnosis and symptoms, and problems likely to benefit from palliative care documented in clinical records 3 months prior to the final ED attendance were extracted. RESULTS: Over 1 year, 102 people aged 65+ died in the ED, frequently following an acute event (n = 90). 63.7% presented out of hours. 98/102 were admitted by ambulance, over half (n = 59) from home. Half (n = 50) had attended the same ED or been admitted to the same hospital in the previous 12 months. Over half (58/102) presented with diagnoses that signalled palliative care need. Of these, 29 had recorded symptoms a week before death and 28 had complex social issues 3 months prior to death. Only eight were known to palliative care services. CONCLUSIONS: There is considerable palliative care need among older people who ultimately died in the ED, of whom only a minority were known to palliative care services in this study. Previous ED and hospital admission suggest opportunities for referral and forward planning. More older people in need of palliative care must be identified and managed earlier to avoid future undesired admissions and deaths in hospital.

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.

Palliative care for people severely affected by multiple sclerosis: evaluation of a novel palliative care service.

Multiple sclerosis results in both physical and psychological disability but some patients have needs that are not adequately met by existing services. Our objective was to explore whether a new palliative care service improved outcomes for people severely affected by multiple sclerosis. A delayed intervention randomized controlled trial was undertaken with multiple sclerosis patients deemed by staff to have palliative care needs. The intervention was a multiprofessional palliative care team assessment and follow-up. The intervention group was offered the team immediately (fast track, FI); the control group continued best standard care and then offered the team after 3 months (standard intervention, SI). The main outcome measures were: patient reported issues using the Palliative Care Outcome Scale and Multiple Sclerosis Impact Scale at 12 weeks and caregiver burden using the Zarit Burden Inventory. Sixty-nine people were referred to the service; 52 consented or were eligible to be randomized (26 to the FI and 26 to the SI groups). At 12 weeks people in the FI group had an improvement (mean change -1.0) in the total score of 5 key symptoms whereas there was deterioration in the SI group (mean change 1.1, F = 4.75, p = 0.035). There was no difference in the change in general Palliative Care Outcome Scale or Multiple Sclerosis Impact Scale scores. There was an improvement in caregiver burden in the FI group and a deterioration in the SI group (F = 7.60, p = 0.013). Involvement with the palliative care service appeared to positively affect some key symptoms and reduced informal caregiver burden.

From paper to paperless: Do electronic systems ensure safe and effective communication and documentation of DNACPR decisions?

INTRODUCTION: An electronic resuscitation system, implemented in 2015, within electronic patient records (EPR) at King's College Hospital NHS Foundation Trust was studied, aiming to review and improve decision documentation and communication. METHOD: The study (January 2018 - June 2018) included all gerontology inpatients with electronic do not attempt cardiopulmonary resuscitation (e-DNACPR) decisions. Cases were identified weekly, followed by retrospective analysis of discharges. Amendments to the electronic system and improvements were implemented between cycles. CYCLE 1: One-hundred and thirty-three patients were included; 85% had an e-DNACPR form; 86% of all forms had senior doctor involvement; 68% evidenced patient/relative discussion; 13% documented multidisciplinary team (MDT) discussion. INTERVENTIONS: A mandatory 'named nurse' field was added to the form and trust-wide education programme implemented. CYCLE 2: One-hundred and twenty-six patients were included; 100% had an e-DNACPR form; 93% evidenced senior doctor involvement; 71% evidenced patient/relative discussion; 57% documented MDT discussion. CONCLUSION: Changes to the process and trust-wide education resulted in more robust documentation and communication.

Population-Based Quality Indicators for End-of-Life Cancer Care: A Systematic Review.

IMPORTANCE: Improving the quality of cancer care is an international priority. Population-based quality indicators (QIs) are key to this process yet remain almost exclusively used for evaluating care during the early, often curative, stages of disease. OBJECTIVES: To identify all existing QIs for the care of patients with cancer who have advanced disease and/or are at the end of life and to evaluate each indicator's measurement properties and appropriateness for use. EVIDENCE REVIEW: For this systematic review, 5 electronic databases (MEDLINE, Embase, CINAHL, PsycINFO, and the Cochrane Library) were searched from inception through February 4, 2019, for studies describing the development, review, and/or testing of QIs for the care of patients with cancer who have advanced disease and/or are at the end of life. For each QI identified, descriptive information was extracted and 6 measurement properties (acceptability, evidence base, definition, feasibility, reliability, and validity) were assessed using previously established criteria, with 4 possible ratings: positive, intermediate, negative, and unknown. Ratings were collated and each QI classified as appropriate for use, inappropriate for use, or of limited testing. Among the QIs determined as appropriate for use, a recommended shortlist was generated by excluding those that were specific to patient subgroups and/or care settings; related QIs were identified, and the indicator with the highest rating was retained. FINDINGS: The search yielded 7231 references, 35 of which (from 28 individual studies) met the eligibility criteria. Of 288 QIs extracted (260 unique), 103 (35.8%) evaluated physical aspects of care and 109 (37.8%) evaluated processes of care. Quality indicators relevant to psychosocial (18 [6.3%]) or spiritual and cultural (3 [1.0%]) care domains were limited. Eighty QIs (27.8%) were determined to be appropriate for use, 116 (40.3%) inappropriate for use, and 92 (31.9%) of limited testing. The measurement properties with the fewest positive assessments were acceptability (38 [13.2%]) and validity (63 [21.9%]). Benchmarking data were reported for only 16 QIs (5.6%). The final 15 recommended QIs came from 6 studies. CONCLUSIONS AND RELEVANCE: The findings suggest that only a small proportion of QIs developed for the care of patients with cancer who have advanced disease and/or are at the end of life have received adequate testing and/or are appropriate for use. Further testing may be needed, as is research to establish benchmarking data and to expand QIs relevant to psychosocial, cultural, and spiritual care domains.

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.

Assessing the feasibility, acceptability and potential effectiveness of Dignity Therapy for people with advanced cancer referred to a hospital-based palliative care team: Study protocol.

BACKGROUND: Loss of dignity for people with advanced cancer is associated with high levels of psychological and spiritual distress and the loss of the will to live. Dignity Therapy is a brief psychotherapy, which has been developed to help promote dignity and reduce distress. It comprises a recorded interview, which is transcribed, edited then returned to the patient, who can bequeath it to people of their choosing. Piloting in Canada, Australia and the USA, has suggested that Dignity Therapy is beneficial to people with advanced cancer and their families. The aims of this study are to assess the feasibility, acceptability and potential effectiveness of Dignity Therapy to reduce psychological and spiritual distress in people with advanced cancer who have been referred to hospital-based palliative care teams in the UK, and to pilot the methods for a Phase III RCT. DESIGN: A randomised controlled open-label trial. Forty patients with advanced cancer are randomly allocated to one of two groups: (i) Intervention (Dignity Therapy offered in addition to any standard care), and (ii) Control group (standard care). Recipients of the 'generativity' documents are asked their views on taking part in the study and the therapy. Both quantitative and qualitative outcomes are assessed in face-to-face interviews at baseline and at approximately one and four weeks after the intervention (equivalent in the control group). The primary outcome is patients' sense of dignity (potential effectiveness) assessed by the Patient Dignity Inventory. Secondary outcomes for patients include distress, hopefulness and quality of life. In view of the relatively small sample size, quantitative analyses are mainly descriptive. The qualitative analysis uses the Framework method. DISCUSSION: Dignity Therapy is brief, can be delivered at the bedside and may help both patients and their families. This detailed exploratory research shows if it is feasible to offer Dignity Therapy to patients with advanced cancer, many of whom are likely to be in the terminal stage of their illness, whether it is acceptable to them and their families, if it is likely to be effective, and determine whether a Phase III RCT is desirable. TRIAL REGISTRATION: Current Controlled Clinical Trials: ISRCTN29868352.

"I know he controls cancer": the meanings of religion among Black Caribbean and White British patients with advanced cancer.

There is evidence that religion and spirituality affect psychosocial adjustment to cancer. However, little is known about the perceptions and meanings of religion and spirituality among Black and minority ethnic groups living with cancer in the UK. We conducted semi-structured interviews with 26 Black Caribbean and 19 White British patients living in South London boroughs with advanced cancer to explore how religion and spirituality influenced their self-reported cancer experience. Twenty-five Black Caribbean patients and 13/19 White British patients volunteered views on the place of religion or God in their life. Spirituality was rarely mentioned. Christianity was the only religion referred to. Strength of religious belief appeared to be more pronounced among Black Caribbean patients. Three main themes emerged from patients' accounts: the ways in which patients believed religion and belief in God helped them comprehend cancer; how they felt their faith and the emotional and practical support provided by church communities assisted them to live with the physical and psychological effects of their illness and its progression; and Black Caribbean patients identified the ways in which the experience of cancer promoted religious identity. We identified that patients from both ethnic groups appeared to derive benefit from their religious faith and belief in God. However, the manner in which these were understood and expressed in relation to their cancer was culturally shaped. We recommend that when health and social care professionals perform an assessment interview with patients from different cultural backgrounds to their own, opportunities are made for them to express information about their illness that may include religious and spiritual beliefs since these may alter perceptions of their illness and symptoms and thereby influence treatment decisions.