Role and response of primary healthcare services in community end-of-life care during COVID-19: Qualitative study and recommendations for primary palliative care delivery.

BACKGROUND: The need for end-of-life care in the community increased significantly during the COVID-19 pandemic. Primary care services, including general practitioners and community nurses, had a critical role in providing such care, rapidly changing their working practices to meet demand. Little is known about primary care responses to a major change in place of care towards the end of life, or the implications for future end-of-life care services. AIM: To gather general practitioner and community nurse perspectives on factors that facilitated community end-of-life care during the COVID-19 pandemic, and to use this to develop recommendations to improve future delivery of end-of-life care. DESIGN: Qualitative interview study with thematic analysis, followed by refinement of themes and recommendations in consultation with an expert advisory group. PARTICIPANTS: General practitioners (n = 8) and community nurses (n = 17) working in primary care in the UK. RESULTS: General practitioner and community nurse perspectives on factors critical to sustaining community end-of-life care were identified under three themes: (1) partnership working is key, (2) care planning for end-of-life needs improvement, and (3) importance of the physical presence of primary care professionals. Drawing on participants' experiences and behaviour change theory, recommendations are proposed to improve end-of-life care in primary care. CONCLUSIONS: To sustain and embed positive change, an increased policy focus on primary care in end-of-life care is required. Targeted interventions developed during COVID-19, including online team meetings and education, new prescribing systems and unified guidance, could increase capacity and capability of the primary care workforce to deliver community end-of-life care.

Service change and innovation in community end-of-life care during the COVID-19 pandemic: Qualitative analysis of a nationwide primary care survey.

BACKGROUND: Primary healthcare teams (general practice and community nursing services) within the United Kingdom provided the majority of community end-of-life care during COVID-19, alongside specialist palliative care services. As international healthcare systems move to a period of restoration following the first phases of the pandemic, the impact of rapidly-implemented service changes and innovations across primary and specialist palliative care services must be understood. AIM: To provide detailed insights and understanding into service changes and innovation that occurred in UK primary care to deliver end-of-life care during the first phase of the COVID-19 pandemic. DESIGN: Cross-sectional online survey. Responses were analysed using descriptive statistics and thematic analysis. SETTING/PARTICIPANTS: United Kingdom survey of general practitioners and community nurses, circulated via regional and national professional networks. RESULTS: A total of 559 valid responses were received from 387 community nurses, 156 general practitioners and 16 'other'. Over a third of respondents (n = 224; 40.8%) experienced changes in the organisation of their team in order to provide end-of-life care in response to the COVID-19 pandemic. Three qualitative themes were identified: COVID-19 as a catalyst for change in primary palliative care; new opportunities for more responsive and technological ways of working; and pandemic factors that improved and strengthened interprofessional collaboration. CONCLUSION: Opportunity has arisen to incorporate cross-boundary service changes and innovations, implemented rapidly at the time of crisis, into future service delivery. Future research should focus on which service changes and innovations provide the most benefits, who for and how, within the context of increased patient need and complexity.

Risk Predictors and Symptom Features of Long COVID Within a Broad Primary Care Patient Population Including Both Tested and Untested Patients.

INTRODUCTION: Symptoms may persist after the initial phases of COVID-19 infection, a phenomenon termed long COVID. Current knowledge on long COVID has been mostly derived from test-confirmed and hospitalized COVID-19 patients. Data are required on the burden and predictors of long COVID in a broader patient group, which includes both tested and untested COVID-19 patients in primary care. METHODS: This is an observational study using data from Platform C19, a quality improvement program-derived research database linking primary care electronic health record data (EHR) with patient-reported questionnaire information. Participating general practices invited consenting patients aged 18-85 to complete an online questionnaire since 7th August 2020. COVID-19 self-diagnosis, clinician-diagnosis, testing, and the presence and duration of symptoms were assessed via the questionnaire. Patients were considered present with long COVID if they reported symptoms lasting ≥4 weeks. EHR and questionnaire data up till 22nd January 2021 were extracted for analysis. Multivariable regression analyses were conducted comparing demographics, clinical characteristics, and presence of symptoms between patients with long COVID and patients with shorter symptom duration. RESULTS: Long COVID was present in 310/3151 (9.8%) patients with self-diagnosed, clinician-diagnosed, or test-confirmed COVID-19. Only 106/310 (34.2%) long COVID patients had test-confirmed COVID-19. Risk predictors of long COVID were age ≥40 years (adjusted Odds Ratio [AdjOR]=1.49 [1.05-2.17]), female sex (adjOR=1.37 [1.02-1.85]), frailty (adjOR=2.39 [1.29-4.27]), visit to A&E (adjOR=4.28 [2.31-7.78]), and hospital admission for COVID-19 symptoms (adjOR=3.22 [1.77-5.79]). Aches and pain (adjOR=1.70 [1.21-2.39]), appetite loss (adjOR=3.15 [1.78-5.92]), confusion and disorientation (adjOR=2.17 [1.57-2.99]), diarrhea (adjOR=1.4 [1.03-1.89]), and persistent dry cough (adjOR=2.77 [1.94-3.98]) were symptom features statistically more common in long COVID. CONCLUSION: This study reports the factors and symptom features predicting long COVID in a broad primary care population, including both test-confirmed and the previously missed group of COVID-19 patients.

Community end-of-life care during the COVID-19 pandemic: findings of a UK primary care survey.

BACKGROUND: Thousands of people in the UK have required end-of-life care in the community during the COVID-19 pandemic. Primary healthcare teams (general practice and community nursing services) have provided the majority of this care, alongside specialist colleagues. There is a need to learn from this experience in order to inform future service delivery and planning. AIM: To understand the views of GPs and community nurses providing end-of-life care during the first wave of the COVID-19 pandemic. DESIGN & SETTING: A web-based, UK-wide questionnaire survey circulated via professional general practice and community nursing networks, during September and October 2020. METHOD: Responses were analysed using descriptive statistics and an inductive thematic analysis. RESULTS: Valid responses were received from 559 individuals (387 community nurses, 156 GPs, and 16 unspecified roles), from all regions of the UK. The majority reported increased involvement in providing community end-of-life care. Contrasting and potentially conflicting roles emerged between GPs and community nurses. There was increased use of remote consultations, particularly by GPs. Community nurses took greater responsibility in most aspects of end-of-life care practice, particularly face-to-face care, but reported feeling isolated. For some GPs and community nurses, there has been considerable emotional distress. CONCLUSION: Primary healthcare services are playing a critical role in meeting increased need for end-of-life care in the community during the COVID-19 pandemic. They have adapted rapidly, but the significant emotional impact, especially for community nurses, needs addressing alongside rebuilding trusting and supportive team dynamics.

5 Primary care delivers palliative care during COVID-19: a national UK survey of GP’s and community nurses

BackgroundRapid, dramatic changes in primary healthcare services occurred during the COVID-19 pandemic. More palliative and end-of-life care (PEOLC) in the community and care homes needed delivered in new ways. This study sought General Practitioner (GP) and community nursing views about changes related to PEOLC during the COVID-19 pandemic.MethodsA national online survey was developed from current literature, patient, public and key stakeholder involvement and disseminated to GPs and community nurses between 01.09.2020 and 16.10.2020. Fixed response and open free text questions addressed demographics, PEOLC provision, changes, challenges and exemplars of good practice.ResultsThere were 559 responses (387 (71.3%) community nurses;156 (28.7%) GPs;6 ‘role not specified’) from all UK countries. Over half (296, 53.1%) cared for patients dying with ‘confirmed’ COVID-19 and provided PEOLC ‘a lot more’ or ‘a bit more than usual’ to non-COVID patients (322, 58.2%).All respondents reported increased need to provide family support (339, 60.9% providing ‘a lot’/’a bit more than usual’);a larger proportion of community nurses (252, 66.0%) reported this role change compared with doctors (75, 48.1%, p=0.01). Over forty percent of all respondents reported they were undertaking more advance care planning (266, 53.0%), anticipatory prescribing (227, 56.4%), symptom management (275, 51.1%), death verification (222, 47.8%) and bereavement support (237, 44.6%). Over three-quarters (211, 77.0%) of community nurses had conducted ‘more’/‘a lot more’ face-to-face visits, whereas 53 (34.0%) of GPs had done ‘less’ or ‘a lot less’ (<0.0001).Qualitative free-text themes relate to increasing end-of-life care workload;changing roles and models of consultation;and emotional impact.ConclusionsContrasting and potentially conflicting roles emerged between GPs and community nurses concerning their response to the increased demand and complexity of PEOLC during the pandemic. The significant emotional impact, especially for community nurses, needs addressing alongside rebuilding trusting and supportive team dynamics.