Adaptation and multicentre validation of a patient-centred outcome scale for people severely ill with COVID (IPOS-COV).

BACKGROUND: Patient-centred measures to capture symptoms and concerns have rarely been reported in severe COVID. We adapted and tested the measurement properties of the proxy version of the Integrated Palliative care Outcome Scale-IPOS-COV for severe COVID using psychometric approach. METHODS: We consulted experts and followed consensus-based standards for the selection of health status measurement instruments and United States Food and Drug Administration guidance for adaptation and analysis. Exploratory Factor Analysis and clinical perspective informed subscales. We tested the internal consistency reliability, calculated item total correlations, examined re-test reliability in stable patients, and also evaluated inter-rater reproducibility. We examined convergent and divergent validity of IPOS-COV with the Australia-modified Karnofsky Performance Scale and evaluated known-groups validity. Ability to detect change was examined. RESULTS: In the adaptation phase, 6 new items were added, 7 items were removed from the original measure. The recall period was revised to be the last 12-24 h to capture fast deterioration in COVID. General format and response options of the original Integrated Palliative care Outcome Scale were preserved. Data from 572 patients with COVID from across England and Wales seen by palliative care services were included. Four subscales were supported by the 4-factor solution explaining 53.5% of total variance. Breathlessness-Agitation and Gastro-intestinal subscales demonstrated good reliability with high to moderate (a = 0.70 and a = 0.67) internal consistency, and item-total correlations (0.62-0.21). All except the Flu subscale discriminated well between patients with differing disease severity. Inter-rater reliability was fair with ICC of 0.40 (0.3-0.5, 95% CI, n = 324). Correlations between the subscales and AKPS as predicted were weak (r = 0.13-0.26) but significant (p < 0.01). Breathlessness-Agitation and Drowsiness-Delirium subscales demonstrated good divergent validity. Patients with low oxygen saturation had higher mean Breathlessness-Agitation scores (M = 5.3) than those with normal levels (M = 3.4), t = 6.4 (186), p < 0.001. Change in Drowsiness-Delirium subscale correctly classified patients who died. CONCLUSIONS: IPOS-COV is the first patient-centred measure adapted for severe COVID to support timely management. Future studies could further evaluate its responsiveness and clinical utility with clinimetric approaches.

Translation and cross-cultural adaptation of the Integrated Palliative Care Outcome Scale in Hindi: Toward capturing palliative needs and concerns in Hindi speaking patients.

BACKGROUND: Culturally relevant patient-centered outcomes tools are needed to identify the needs of patients and to assess their palliative care concerns. AIM: To translate and culturally adapt the Integrated Palliative Care Outcome Scale (IPOS) into Hindi. DESIGN: The study applied a standardized methodology entailing six phases for translation and content validation: equivalence setting through a three-step process; forward translation; blind backward translation; expert review by a panel of the POS team; cognitive de-briefing with patients; and proof-reading of the final tool. All interviews and focus groups were audio-recorded, transcribed and analyzed using content analysis. SETTING/PARTICIPANTS: (1) Healthcare professionals including doctors, nurses, psychologists, counselors, and volunteers working in Indian palliative care settings with expertise in both English and Hindi languages; (2) Hindi speaking patients diagnosed with cancer who were receiving palliative care in community settings. Caregivers, palliative care experts, and language translators contributed to the translation procedure. RESULTS: Phrases like nausea, poor appetite, drowsiness, and depression were difficult to translate into Hindi. Response categories "occasional" and "sometimes" were overlapping. All items, instructions and response categories were simple to understand. A visual thermometer is a unique feature of Hindi IPOS to facilitate responses from less educated patients. CONCLUSION: Hindi IPOS has face and content validity for use in clinical practice and research. The Hindi IPOS has implications beyond Indian palliative care settings. Millions of Hindi speakers can now respond to IPOS, and have a tool for communicating their palliative care needs in their mother tongue to inform patient-centered care.

Deaths at home, area-based deprivation and the effect of the Covid-19 pandemic: An analysis of mortality data across four nations.

BACKGROUND: The number and proportion of home deaths in the UK increased during the Covid-19 pandemic. It is not known whether these changes were experienced disproportionately by people from different socioeconomic groups. AIM: To examine the association between home death and socioeconomic position during the Covid-19 pandemic, and how this changed between 2019 and 2020. DESIGN: Retrospective cohort study using population-based individual-level mortality data. SETTING/PARTICIPANTS: All registered deaths in England, Wales, Scotland and Northern Ireland. The proportion of home deaths between 28th March and 31st December 2020 was compared with the same period in 2019. We used Poisson regression models to evaluate the association between decedent's area-based level of deprivation and risk of home death, as well as the interaction between deprivation and year of death, for each nation separately. RESULTS: Between the 28th March and 31st December 2020, 409,718 deaths were recorded in England, 46,372 in Scotland, 26,410 in Wales and 13,404 in Northern Ireland. All four nations showed an increase in the adjusted proportion of home deaths between 2019 and 2020, ranging from 21 to 28%. This increase was lowest for people living in the most deprived areas in all nations, with evidence of a deprivation gradient in England. CONCLUSIONS: The Covid-19 pandemic exacerbated a previously described socioeconomic inequality in place of death in the UK. Further research to understand the reasons for this change and if this inequality has been sustained is needed.

Cultural adaptation of the Integrated Palliative care Outcome Scale for neurological symptoms.

OBJECTIVES: Standardized measures for assessing neurological patients needing palliative care remain scarce. The Integrated Palliative care Outcome Scale for neurological patients in its short form (IPOS Neuro-S8) helps assess and identify patients' symptom burden and needs early but has not yet been validated in German. The aim was to culturally adapt and translate the IPOS Neuro-S8 into the German health-care context and evaluate its face and content validity. METHODS: Cultural adaptation study following the first 6 out of 8 phases of the Palliative care Outcome Scale measures manual: (1) conceptual definition, (2) forward translation to German, (3) backward translation to English, (4) expert review, (5) cognitive debriefing, (6) proofreading. Neurological patients needing palliative care and clinical staff of the Department of Palliative Medicine or Neurology of the University Hospital of Cologne were included. Data were analyzed using thematic content analysis and descriptive statistics. RESULTS: A total of 13 patients and 16 clinical staff participated in this study. The expert review panel (phase 4) consisted of 11 additional members. While patients (n = 9) and clinical staff (n = 11) confirmed that the IPOS Neuro-S8 is an intelligible tool that is well accepted (phase 5), some linguistic and cultural differences were found between the original English and German versions. These mainly concerned the items mouth problems and spasms. SIGNIFICANCE OF RESULTS: The German version of the IPOS Neuro-S8 has demonstrated face and content validity and captures relevant symptoms of neurological patients needing palliative care. Its psychometric properties, including construct and criterion validity, will be investigated next.

Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data.

BACKGROUND: Palliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients' symptom self-management, independence and social participation throughout advanced illness. Rehabilitation services were highly disrupted during the Covid-19 pandemic. AIM: To understand rehabilitation provision in palliative care services during the Covid-19 pandemic, identifying and reflecting on adaptative and innovative practice to inform ongoing provision. DESIGN: Cross-sectional national online survey. SETTING/PARTICIPANTS: Rehabilitation leads for specialist palliative care services across hospice, hospital, or community settings, conducted from 30/07/20 to 21/09/2020. FINDINGS: 61 completed responses (England, n = 55; Scotland, n = 4; Wales, n = 1; and Northern Ireland, n = 1) most frequently from services based in hospices (56/61, 92%) providing adult rehabilitation. Most services (55/61, 90%) reported rehabilitation provision becoming remote during Covid-19 and half reported reduced caseloads. Rehabilitation teams frequently had staff members on sick-leave with suspected/confirmed Covid-19 (27/61, 44%), redeployed to other services/organisations (25/61, 41%) or furloughed (15/61, 26%). Free text responses were constructed into four themes: (i) fluctuating shared spaces; (ii) remote and digitised rehabilitation offer; (iii) capacity to provide and participate in rehabilitation; (iv) Covid-19 as a springboard for positive change. These represent how rehabilitation services contracted, reconfigured, and were redirected to more remote modes of delivery, and how this affected the capacity of clinicians and patients to participate in rehabilitation. CONCLUSION: This study demonstrates how changes in provision of rehabilitation during the pandemic could act as a springboard for positive changes. Hybrid models of rehabilitation have the potential to expand the equity of access and reach of rehabilitation within specialist palliative care.

Charitably funded hospices and the challenges associated with the COVID-19 pandemic: a mixed-methods study (CovPall).

BACKGROUND: Independent charitably funded hospices have been an important element of the UK healthcare response to the COVID-19 pandemic. Hospices usually have different funding streams, procurement processes, and governance arrangements compared to NHS provision, which may affect their experiences during the COVID-19 pandemic. The aim of this study is to understand the challenges faced by charitably funded hospices during the COVID-19 pandemic. METHODS: Eligible Organisations providing specialist palliative or hospice care completed the online CovPall survey (2020) which explored their response to the COVID-19 pandemic. Eligible organisations were then purposively selected to participate in interviews as part of qualitative case studies (2020-21) to understand challenges in more depth. Free-text responses from the survey were analysed using content analysis and were categorised accordingly. These categorisations were used a priori for a reflexive thematic analysis of interview data. RESULTS: 143 UK independent charitably funded hospices completed the online CovPall survey. Five hospices subsequently participated in qualitative case studies (n = 24 staff interviews). Key themes include: vulnerabilities of funding; infection control during patient care; and bereavement support provision. Interviewees discussed the fragility of income due to fundraising events stopping; the difficulties of providing care to COVID-19 and non-COVID-19 patients within relatively small organisations; and challenges with maintaining the quality of bereavement services. CONCLUSION: Some unique care and provision challenges during the COVID-19 pandemic were highlighted by charitably funded hospices. Funding core services charitably and independently may affect their ability to respond to pandemics, or scenarios where resources are unexpectedly insufficient.

'Necessity is the mother of invention': Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multinational survey (CovPall).

BACKGROUND: Specialist palliative care services have a key role in a whole system response to COVID-19, a disease caused by the SARS-CoV-2 virus. There is a need to understand service response to share good practice and prepare for future care. AIM: To map and understand specialist palliative care services innovations and practice changes in response to COVID-19. DESIGN: Online survey of specialist palliative care providers (CovPall), disseminated via key stakeholders. Data collected on service characteristics, innovations and changes in response to COVID-19. Statistical analysis included frequencies, proportions and means, and free-text comments were analysed using a qualitative framework approach. SETTING/PARTICIPANTS: Inpatient palliative care units, home nursing services, hospital and home palliative care teams from any country. RESULTS: Four hundred and fifty-eight respondents: 277 UK, 85 Europe (except UK), 95 World (except UK and Europe), 1 missing country. 54.8% provided care across 2+ settings; 47.4% hospital palliative care teams, 57% in-patient palliative care units and 57% home palliative care teams. The crisis context meant services implemented rapid changes. Changes involved streamlining, extending and increasing outreach of services, using technology to facilitate communication, and implementing staff wellbeing innovations. Barriers included; fear and anxiety, duplication of effort, information overload and funding. Enablers included; collaborative teamwork, staff flexibility, a pre-existing IT infrastructure and strong leadership. CONCLUSIONS: Specialist palliative care services have been flexible, highly adaptive and have adopted low-cost solutions, also called 'frugal innovations', in response to COVID-19. In addition to financial support, greater collaboration is essential to minimise duplication of effort and optimise resource use.ISRCTN16561225 https://doi.org/10.1186/ISRCTN16561225.

Understanding and addressing challenges for advance care planning in the COVID-19 pandemic: An analysis of the UK CovPall survey data from specialist palliative care services.

BACKGROUND: Specialist palliative care services play an important role in conducting advance care planning during COVID-19. Little is known about the challenges to advance care planning in this context, or the changes services made to adapt. AIM: Describe the challenges that UK specialist palliative care services experienced regarding advance care planning during COVID-19 and changes made to support timely conversations. DESIGN: Online survey of UK palliative/hospice services' response to COVID-19. Closed-ended responses are reported descriptively. Open-ended responses were analysed using a thematic Framework approach using the Social Ecological Model to understand challenges. RESPONDENTS: Two hundred and seventy-seven services. RESULTS: More direct advance care planning was provided by 38% of services, and 59% provided more support to others. Some challenges to advance care planning pre-dated the pandemic, whilst others were specific to/exacerbated by COVID-19. Challenges are demonstrated through six themes: complex decision making in the face of a new infectious disease; maintaining a personalised approach; COVID-19-specific communication difficulties; workload and pressure; sharing information; and national context of fear and uncertainty. Two themes demonstrate changes made to support: adapting local processes and adapting local structures. CONCLUSIONS: Professionals and healthcare providers need to ensure advance care planning is individualised by tailoring it to the values, priorities, and ethnic/cultural/religious context of each person. Policymakers need to consider how high-quality advance care planning can be resourced as a part of standard healthcare ahead of future pandemic waves. In facilitating this, we provide questions to consider at each level of the Social Ecological Model.

Towards patient-centred cancer care: cross-cultural validity and responsiveness of the Turkish Integrated Palliative care Outcome Scale.

BACKGROUND: A valid measure to describe the most important needs and concerns of people with life-threatening illnesses is missing in Cyprus. Our aim was to adapt and test the cross-cultural validity and responsiveness of the Integrated Palliative care Outcome Scale (IPOS) in a cohort of Turkish speaking cancer patients. METHODS: The IPOS (English) patient-reported measure was translated into Turkish following published guidelines including, 2 independent forward, 2 independent blind backward translations, expert panel review by 7 members and field testing with 11 cognitive interviews (5 patients and 6 specialists) and final approval of the copyright holder. Consecutive cancer patients (n = 234) seen by the community palliative care services were recruited from Help Those with Cancer Society (KHYD); of those 82 were followed-up. The instrument was administered by personal interview. Confirmatory Factor Analysis was used to validate the factor structure of Turkish IPOS. Internal consistency reliability of the subscales was evaluated by Cronbach's alpha and Intraclass Correlation Coefficient respectively. Validity was assessed by calculating Pearson's correlation coefficient (r) between Turkish IPOS scores and Turkish version of EQ-5D-3L - a validated generic measure of health status developed by the EuroQol Group. RESULTS: Turkish IPOS is conceptually and semantically equivalent to the English version and linguistically valid. The CFA was inconclusive for the three factor structure due to low sample size, as the SRMR and CFI tests only approached the defined minimums warranting further investigation. There were low levels of missing values, and no ceiling or floor effects. The Physical (α = 0.91) and the Social and Quality of Care Issues (α = 0.75) sub-scales showed good internal consistencies, however Emotional sub-scale showed poor internal consistency (α = 0.64). The reliability of the Physical (ICC = 0.51, 0.45-0.56 95% CI) and Social Quality of Care Issues (ICC = 0.50, 0.42-0.57 95% CI) were moderate. Poor internal consistency (α =0.64) and reliability (ICC = 0.31, 0.24-0.39, 95% CI) was obtained for Emotional Subscale. Construct validity was evidenced through significant correlations in the predicted directions and strength with EQ-5D. Turkish IPOS showed higher needs and concerns in participants at more advanced stages than those at earlier stages of cancer. The standardized response mean (SRM) of - 0.94 suggested large internal responsiveness to clinical change. CONCLUSION: Turkish IPOS is a clear, relevant, acceptable measure and responsive to the needs and concerns of cancer patients, observing regional differences, it may have implications for use in other Turkish speaking communities. Future studies are needed to clarify the factor structure, assess its external responsiveness and to improve the properties of its Emotional subscale.

Establishing key criteria to define and compare models of specialist palliative care: A mixed-methods study using qualitative interviews and Delphi survey.

BACKGROUND: Specialist palliative care services have various configurations of staff, processes and interventions, which determine how care is delivered. Currently, there is no consistent way to define and distinguish these different models of care. AIM: To identify the core components that characterise and differentiate existing models of specialist palliative care in the United Kingdom. DESIGN: Mixed-methods study: (1) semi-structured interviews to identify criteria, (2) two-round Delphi study to rank/refine criteria, and (3) structured interviews to test/refine criteria. SETTING/PARTICIPANTS: Specialist palliative care stakeholders from hospice inpatient, hospital advisory, and community settings. RESULTS: (1) Semi-structured interviews with 14 clinical leads, from eight UK organisations (five hospice inpatient units, two hospital advisory teams, five community teams), provided 34 preliminary criteria. (2) Delphi study: Round 1 (54 participants): thirty-four criteria presented, seven removed and seven added. Round 2 (30 participants): these 34 criteria were ranked with the 15 highest ranked criteria, including setting, type of care, size of service, diagnoses, disciplines, mode of care, types of interventions, 'out-of-hours' components (referrals, times, disciplines, mode of care, type of care), external education, use of measures, bereavement follow-up and complex grief provision. (3) Structured interviews with 21 UK service leads (six hospice inpatients, four hospital advisory and nine community teams) refined the criteria from (1) and (2), and provided four further contextual criteria (team purpose, funding, self-referral acceptance and discharge). CONCLUSION: In this innovative study, we derive 20 criteria to characterise and differentiate models of specialist palliative care - a major paradigm shift to enable accurate reporting and comparison in practice and research.

Understanding Patient-Reported Outcome Measures Used in Adult Survivors Experiencing Long-Term Effects After COVID-19 Infection: A Rapid Review.

Purpose: Patient-reported outcome measures (PROMs) are used in individuals experiencing long-term effects from COVID-19 infection, or Long COVID, to evaluate the quality of life and functional status of these individuals. However, little is known about which PROMs are being utilised and the psychometric properties of these PROMs. Our purpose was thus to explore which PROMs are used in Long COVID patients and to discuss the psychometric properties of the PROMs. Methods: For this rapid review, a systematic literature search was performed in the PubMed, Embase, and CINAHL databases. The found studies were screened using the PRISMA flowchart. We then performed study quality appraisal and assessed the psychometric properties of the found PROMs. Results: Per the systematic literature search and after removal of duplicates, 157 publications were identified for individual screening. After screening and eligibility assessment, 74 articles were selected for our review. In total, 74 PROMs were used and primarily comprised quality of life, fatigue, breathlessness, mental health, and smell/taste issues in COVID "long haulers." Five studies used newly developed, COVID-19-specific PROMs. We assessed the psychometric properties of the 10 most-used PROMs. The majority were found to be reliable and valid instruments. EQ-5D-5L was the most popular and highly rated PROM. Conclusions: We assessed PROMs used in Long COVID patients and evaluated their psychometric properties. EQ-5D-5L was the most favourably rated PROM. PROMs addressing mental health issues are crucial in managing anxiety and depression in Long COVID patients. New COVID-specific PROMs assess functional status and smell/taste perception and show great utilisation potential in olfactory training at COVID smell clinics. However, many reviewed PROMs currently lack sufficient analysis of their psychometric properties. Therefore, future research needs to examine these measures.

Integrated Hospital- and Home-Based Palliative Care for Cancer Patients in Vietnam: People-Centered Outcomes.

CONTEXT: Hospital-based palliative care (PC) linked to palliative home care is rarely accessible in low- and middle-income countries (LMICs). OBJECTIVES: To study people-centered outcomes of a palliative home care team based at a major cancer center in Vietnam. METHODS: The palliative home care team, consisting of at least one physician and one nurse, provided home PC when needed by patients of the cancer center who lived within 10 kilometers. A linguistically validated version of the African Palliative Outcomes Scale was integrated into standard clinical data collection. We retrospectively reviewed data from the 81 consecutive patients on prevalence and severity of pain and other types of physical, psycho-social, and spiritual suffering at the first home visit (baseline) and at the first follow-up visit and measured any differences. RESULTS: There was great demand for palliative home care. From baseline to follow-up, there was significant improvement in pain regardless of the baseline severity of pain (p < 0.003). Among patients with severe pain, breathlessness, nausea/vomiting, diarrhea, depression, or worry about illness at baseline, there was significant improvement (p < 0.001), and caregiver worry about the patient also improved significantly. CONCLUSION: Integration of hospital- and home-based PC for cancer patients is feasible and improves people-centered outcomes at low cost in Vietnam. These data suggest that benefits to patients, their families, and the health care system can accrue from integration of PC at all levels in Vietnam and other LMICs.

Strengthening Community End-of-Life Care through Implementing Measurement-Based Palliative Care.

The increasing demand for palliative care in New Zealand presents a potential threat to the quality of service delivery. One strategy to overcome this is through the implementation of valid and reliable patient-reported outcome measures. This mixed-methods study aimed to (1) implement measurement-based palliative care (MBPC) in a community palliative care service in Auckland, New Zealand; (2) evaluate the clinical utility of MBPC perceived by clinicians; (3) describe patient characteristics as measured by the Integrated Palliative Care Outcome Scale (IPOS), the Australasian Modified Karnofsky Performance Scale (AKPS), and Phase of Illness (POI); and (4) evaluate the internal consistency of the IPOS. Participants were over 18 years of age from a community outpatient palliative care service. In a phased approach to implementation, healthcare staff were educated on each instrument used for patient assessment. Uptake and internal consistency were evaluated through descriptive statistics. An interpretive descriptive methodology was used to explore the clinical utility of MBPC through semi-structured interviews with seven clinical staff members. Individual patient assessments (n = 1507) were undertaken predominantly on admission, with decreasing frequency as patients advanced through to the terminal phase of their care. Mean total IPOS scores were 17.97 (SD = 10.39, α = 0.78). The POI showed that 65% of patients were in the stable phase, 20% were in the unstable phase, 9% were in the deteriorating phase, and 2% were in the terminal phase. Clinicians reported that MBPC facilitated holistic and comprehensive assessments, as well as the development of a common interdisciplinary language. Clinicians expressed discomfort using the psychosocial and spiritual items. Measurement-based palliative care was only partially implemented but it was valued by staff and perceived to increase the quality of service delivery. Future research should determine the optimal timing of assessments, cultural responsivity for Maori and Pacific patients, and the role of MBPC in decision support for clinicians.

Intelligent Palliative Care Based on Patient-Reported Outcome Measures.

CONTEXT: The growth of patient reported outcome measures data in palliative care provides an opportunity for machine learning to identify patterns in patient responses signifying different phases of illness. OBJECTIVES: The study will explore if machine learning and network analysis can identify phases in patient palliative status through symptoms reported on the Integrated Palliative Care Outcome Scale (IPOS). METHODS: A partly cross-sectional and partially longitudinal observational study was undertaken using the Australasian Karnofsky Performance Scale (AKPS); Integrated Palliative Care Outcome Scale (IPOS); Phase of Illness (POI). Patient palliative records (n = 1507, 65% stable, 20% unstable, 9% deteriorating, 2% terminal) from 804 adult patients enrolled in a New Zealand palliative care service were analysed using a combination of statistical, machine learning and network analysis techniques. RESULTS: Data from IPOS showed considerable variation with phase. Also, network analysis showed clear associations between items by phase. Six machine learning techniques identified the most important variables for predicting possible transition between phases of illness. Network analysis for all patients showed that Poor Appetite and Loss of Energy were central IPOS items, with Loss of Energy linked to Drowsiness, Shortness of Breath and Lack of Mobility on the one hand, and Poor Appetite linked to Nausea, Vomiting, Constipation and Sore and Dry Mouth on the other. CONCLUSION: These preliminary results, when coupled with the latest technological developments in mobile apps and wearable technology, could point the way to increased use of digital therapeutics in continuous palliative care monitoring.

Symptom Control and Survival for People Severely ill With COVID: A Multicentre Cohort Study (CovPall-Symptom).

CONTEXT: Evidence of symptom control outcomes in severe COVID is scant. OBJECTIVES: To determine changes in symptoms among people severely ill or dying with COVID supported by palliative care, and associations with treatments and survival. METHODS: Multicentre cohort study of people with COVID across England and Wales supported by palliative care services, during the pandemic in 2020 and 2021. We analysed clinical, demographic and survival data, symptom severity at baseline (referral to palliative care, first COVID assessment) and at three follow-up assessments using the Integrated Palliative care Outcome Scale - COVID version. RESULTS: We included 572 patients from 25 services, mostly hospital support teams; 496 (87%) were newly referred to palliative care with COVID, 75 (13%) were already supported by palliative care when they contracted COVID. At baseline, patients had a mean of 2.4 co-morbidities, mean age 77 years, a mean of five symptoms, and were often bedfast or semiconscious. The most prevalent symptoms were: breathlessness, weakness/lack of energy, drowsiness, anxiety, agitation, confusion/delirium, and pain. Median time in palliative care was 46 hours; 77% of patients died. During palliative care, breathlessness, agitation, anxiety, delirium, cough, fever, pain, sore/dry mouth and nausea improved; drowsiness became worse. Common treatments were low dose morphine and midazolam. Having moderate to severe breathlessness, agitation and multimorbidity were associated with shorter survival. CONCLUSION: Symptoms of COVID quickly improved during palliative care. Breathlessness, agitation and multimorbidity could be used as triggers for timelier referral, and symptom guidance for wider specialities should build on treatments identified in this study.

Experiences of staff providing specialist palliative care during COVID-19: a multiple qualitative case study.

OBJECTIVE: To explore the experiences of, and impact on, staff working in palliative care during the COVID-19 pandemic. DESIGN: Qualitative multiple case study using semi-structured interviews between November 2020 and April 2021 as part of the CovPall study. Data were analysed using thematic framework analysis. SETTING: Organisations providing specialist palliative services in any setting. PARTICIPANTS: Staff working in specialist palliative care, purposefully sampled by the criteria of role, care setting and COVID-19 experience. MAIN OUTCOME MEASURES: Experiences of working in palliative care during the COVID-19 pandemic. RESULTS: Five cases and 24 participants were recruited (n = 12 nurses, 4 clinical managers, 4 doctors, 2 senior managers, 1 healthcare assistant, 1 allied healthcare professional). Central themes demonstrate how infection control constraints prohibited and diluted participants' ability to provide care that reflected their core values, resulting in experiences of moral distress. Despite organisational, team and individual support strategies, continually managing these constraints led to a 'crescendo effect' in which the impacts of moral distress accumulated over time, sometimes leading to burnout. Solidarity with colleagues and making a valued contribution provided 'moral comfort' for some. CONCLUSIONS: This study provides a unique insight into why and how healthcare staff have experienced moral distress during the pandemic, and how organisations have responded. Despite their experience of dealing with death and dying, the mental health and well-being of palliative care staff was affected by the pandemic. Organisational, structural and policy changes are urgently required to mitigate and manage these impacts.

Symptom management in people dying with COVID-19: multinational observational study.

OBJECTIVES: To describe multinational prescribing practices by palliative care services for symptom management in patients dying with COVID-19 and the perceived effectiveness of medicines. METHODS: We surveyed specialist palliative care services, contacted via relevant organisations between April and July 2020. Descriptive statistics for categorical variables were expressed as counts and percentages. Content analysis explored free text responses about symptom management in COVID-19. Medicines were classified using British National Formulary categories. Perceptions on effectiveness of medicines were grouped into five categories; effective, some, limited or unclear effectiveness, no effect. RESULTS: 458 services responded; 277 UK, 85 rest of Europe, 95 rest of the world, 1 missing country. 358 services had managed patients with confirmed or suspected COVID-19. 289 services had protocols for symptom management in COVID-19. Services tended to prescribe medicines for symptom control comparable to medicines used in people without COVID-19; mainly opioids and benzodiazepines for breathlessness, benzodiazepines and antipsychotics for agitation, opioids and cough linctus for cough, paracetamol and non-steroidal anti-inflammatory drugs for fever, and opioids and paracetamol for pain. Medicines were considered to be mostly effective but varied by patient's condition, route of administration and dose. CONCLUSIONS: Services were largely consistent in prescribing for symptom management in people dying with COVID-19. Medicines used prior to COVID-19 were mostly considered effective in controlling common symptoms.

Prohibit, Protect, or Adapt? The Changing Role of Volunteers in Palliative and Hospice Care Services During the COVID-19 Pandemic. A Multinational Survey (Covpall).

BACKGROUND: Volunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the coronavirus disease 2019 (COVID-19) pandemic are unknown. The aim of this study is to understand volunteer deployment and activities within palliative care services, and to identify what may affect any changes in volunteer service provision, during the COVID-19 pandemic. METHODS: Multi-national online survey disseminated via key stakeholders to specialist palliative care services, completed by lead clinicians. Data collected on volunteer roles, deployment, and changes in volunteer engagement. Analysis included descriptive statistics, a multivariable logistic regression, and analysis of free-text comments using a content analysis approach. RESULTS: 458 respondents: 277 UK, 85 rest of Europe, and 95 rest of the world. 68.5% indicated volunteer use pre-COVID-19 across a number of roles (from 458): direct patient facing support (58.7%), indirect support (52.0%), back office (48.5%) and fundraising (45.6%). 11% had volunteers with COVID-19. Of those responding to a question on change in volunteer deployment (328 of 458) most (256/328, 78%) indicated less or much less use of volunteers. Less use of volunteers was associated with being an in-patient hospice, (odds ratio [OR]=0.15, 95% CI=0.07-0.3, P<.001). This reduction in volunteers was felt to protect potentially vulnerable volunteers, with policy changes preventing volunteer support. However, adapting was also seen where new roles were created, or existing roles pivoted to provide virtual support. CONCLUSION: Volunteers were mostly prevented from supporting many forms of palliative care which may have quality and safety implications given their previously central roles. Volunteer re-deployment plans are needed that take a more considered approach, using volunteers more flexibly to enhance care while ensuring safe working practices. Consideration needs to be given to widening the volunteer base away from those who may be considered to be most vulnerable to COVID-19.