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1.
Transfusion ; 2024 Jul 14.
Artículo en Inglés | MEDLINE | ID: mdl-39003752

RESUMEN

BACKGROUND: Lookback investigations are conducted by blood services when a risk of transmission of infection from a donor to a recipient has been identified. They involve tracing transfusion recipients and offering them testing for the relevant infectious agent. Results are relayed to the recipient to provide reassurance that there has been no transmission or to ensure appropriate treatment and care if required, and blood services are able to learn lessons from the planning, delivery, and outcomes of the investigation. A national lookback exercise was conducted in Scotland following the introduction of a test to identify occult hepatitis B infection, as recommended by the UK Advisory Committee for the Safety of Blood, Tissues and Organs (SaBTO) in 2021. METHODS AND MATERIALS: This paper outlines the development and delivery of a national lookback program. It discusses the logistical, economic, ethical, regulatory, and scientific issues that were considered during the planning and delivery of the lookback exercise. RESULTS: Development and delivery of a national lookback required robust governance, engagement of all relevant stakeholders and a shared understanding of aims, effective communication, systems, resources, limitations, and project management. Outcomes included a high testing uptake, low levels of reported anxiety, and a comprehensive data set. CONCLUSION: Key aspects for delivery of a successful large-scale lookback program include a patient-centered approach, clear and accessible communication, and whole-systems multiagency collaboration. Major challenges include stakeholder engagement and capacity.

3.
Palliat Med ; 38(6): 625-643, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38708864

RESUMEN

BACKGROUND: People with palliative care needs and their carers often rely on out-of-hours services to remain at home. Policymakers have recommended implementing telephone advice lines to ensure 24/7 access to support. However, the impact of these services on patient and carer outcomes, as well as the health care system, remains poorly understood. AIM: To evaluate the clinical- and cost-effectiveness of out-of-hours palliative care telephone advice lines, and to identify service characteristics associated with effectiveness. DESIGN: Rapid systematic review (PROSPERO ID: CRD42023400370) with narrative synthesis. DATA SOURCES: Three databases (Medline, EMBASE and CINAHL) were searched in February 2023 for studies of any design reporting on telephone advice lines with at least partial out-of-hours availability. Study quality was assessed using the Mixed Methods Appraisal Tool, and quantitative and qualitative data were synthesised narratively. RESULTS: Twenty-one studies, published 2000-2022, were included. Most studies were observational, none were experimental. While some evidence suggested that telephone advice lines offer guidance and reassurance, supporting care at home and potentially reducing avoidable emergency care use in the last months of life, variability in reporting and poor methodological quality across studies limit our understanding of patient/carer and health care system outcomes. CONCLUSION: Despite their increasing use, evidence for the clinical- and cost-effectiveness of palliative care telephone advice lines remains limited, primarily due to the lack of robust comparative studies. There is a need for more rigorous evaluations incorporating experimental or quasi-experimental methods and longer follow-up, and standardised reporting of telephone advice line models and outcomes, to guide policy and practice.


Asunto(s)
Atención Posterior , Cuidados Paliativos , Teléfono , Humanos , Análisis Costo-Beneficio , Líneas Directas
4.
Int J Nurs Stud ; 153: 104734, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38762308

RESUMEN

BACKGROUND: The prescription of injectable anticipatory medications ahead of possible need for last-days-of-life symptom relief is established community practice internationally. Healthcare teams and policy makers view anticipatory medication as having a key role in optimising effective and timely symptom control. However, how these medications are subsequently administered (used) is unclear and warrants detailed investigation to inform interdisciplinary practice and guidance. OBJECTIVE: To identify the frequency, timing and recorded circumstances of the administration of injectable end-of-life anticipatory medications prescribed for patients living at home and in residential care. DESIGN: A retrospective mixed-methods observational study using general practitioner (family doctor) and community nursing held clinical records. SETTING(S): Community-based care in two English counties. PARTICIPANTS: 167 deceased adult patients (aged 18+) registered with eleven general practitioner practices and two associated community nursing services. These were patients prescribed anticipatory medications, identified from the 30 most recent deaths per practice. Patients died between 1 March 2017 and 25 September 2019, from any cause except trauma, sudden death or suicide. METHODS: Patient characteristics, anticipatory medication discussions, recorded administration contexts and decision-making, medication details, recorded symptom control and comfort at death were collected from clinical records. Data analysis combined quantitative and qualitative analyses in a mixed methods approach. RESULTS: Anticipatory medications were administered to 59.9 % (100/167) patients, commenced between 0 and 586 days before death (median 3 days). Their usage was similar for patients who died from cancer and non-cancer conditions. Anticipatory medications were almost universally started and titrated by visiting nurses. Eleven patients had medications started between 59 days and 586 days before death for recorded reversible non-end-of-life care conditions. Only 5 % (5/100) of patient records contained detailed accounts of patient participation in decisions to start medications: four were recorded as being reluctant to commence medications but agreed to trial injections to relieve symptoms. Crucially, there was recurrent under-recording of the effectiveness of injectable medications and patient comfort. CONCLUSIONS: Prescribed medications were commonly administered by visiting community nurses to help manage last-days-of-life symptoms. However, patient records infrequently referred to the effectiveness of administered medication and perceived patient comfort. Most recorded references to patient and family preferences for involvement in anticipatory medication decision-making and their experiences of care were brief and perfunctory. More detailed information should be routinely recorded in clinical records to enable assessment of the appropriate and effective use of anticipatory medicines and how inter-professional collaboration and services could be developed to provide adequate twenty-four-hour cover. TWEETABLE ABSTRACT: Effectiveness of injectable end-of-life symptom control medications and patient comfort often under-recorded @Ben_Bowers__ @PELi_Cam @TheQNI.


Asunto(s)
Inyecciones , Cuidado Terminal , Humanos , Estudios Retrospectivos , Anciano , Masculino , Femenino , Anciano de 80 o más Años , Persona de Mediana Edad , Adulto
5.
Br J Gen Pract ; 2024 May 28.
Artículo en Inglés | MEDLINE | ID: mdl-38806208

RESUMEN

Introduction The communication of poor prognosis from secondary to primary care helps to ensure that patients with life-limiting illness receive appropriate, coordinated care in line with their preferences. However, little is known about this information-sharing process. Aim To determine how poor prognosis is communicated from secondary care to primary care. Design and setting Systematic literature review and narrative synthesis. Method Four electronic databases were searched from 1st January 2000 to 17th May 2021, supplemented by hand-searching key journals. One quarter of titles and abstracts were independently screened by a second reviewer. Two reviewers undertook data extraction and quality appraisal, independently using the Mixed-Methods Appraisal Tool. Data were analysed using narrative synthesis. Reporting follows PRISMA guidance. Results Searches identified 23,853 unique studies of which 30 met the inclusion criteria. Few studies had a focus on the interprofessional communication of poor prognosis. Information about prognosis was not commonly communicated from secondary to primary care and was more likely to occur if death was imminent. Lack of identification of poor prognosis by secondary care teams was a barrier. Facilitators included shared electronic records and direct clinician-clinician contact. GPs welcomed this information from secondary care and felt it was vital for continuity of care. Conclusion Although the communication of poor prognosis from secondary to primary care is highly valued, it is rare and associated with cultural and systemic challenges. Further research is necessary to understand the information needs of GPs and to explore the challenges facing secondary care clinicians initiating this communication.

6.
PLOS Digit Health ; 3(4): e0000470, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38557799

RESUMEN

Conceptually, this study aimed to 1) identify the challenges and drivers encountered by England's Electronic Palliative Care Coordination System (EPaCCS) projects in the context of challenges and drivers in other projects on data sharing for individual care (also referred to as Health Information Exchange, HIE) and 2) organise them in a comprehensive yet parsimonious framework. The study also had a strong applied goal: to derive specific and non-trivial recommendations for advancing data sharing projects, particularly ones in early stages of development and implementation. Primary data comprised 40 in-depth interviews with 44 healthcare professionals, patients, carers, project team members and decision makers in Cambridgeshire, UK. Secondary data were extracted from four pre-existing literature reviews on Health Information Exchange and Health Information Technology implementation covering 135 studies. Thematic and framework analysis underpinned by "pluralist" coding were the main analytical approaches used. We reduced an initial set of >1,800 parameters into >500 challenges and >300 drivers to implementing EPaCCS and other data sharing projects. Less than a quarter of the 800+ parameters were associated primarily with the IT solution. These challenges and drivers were further condensed into an action-guiding, strategy-informing framework of nine types of "pure challenges", four types of "pure drivers", and nine types of "oppositional or ambivalent forces". The pure challenges draw parallels between patient data sharing and other broad and complex domains of sociotechnical or social practice. The pure drivers differ in how internal or external to the IT solution and project team they are, and thus in the level of control a project team has over them. The oppositional forces comprise pairs of challenges and drivers where the driver is a factor serving to resolve or counteract the challenge. The ambivalent forces are factors perceived simultaneously as a challenge and a driver depending on context, goals and perspective. The framework is distinctive in its emphasis on: 1) the form of challenges and drivers; 2) ambivalence, ambiguity and persistent tensions as fundamental forces in the field of innovation implementation; and 3) the parallels it draws with a variety of non-IT, non-health domains of practice as a source of fruitful learning. Teams working on data sharing projects need to prioritise further the shaping of social interactions and structural and contextual parameters in the midst of which their IT tools are implemented. The high number of "ambivalent forces" speaks of the vital importance for data sharing projects of skills in eliciting stakeholders' assumptions; managing conflict; and navigating multiple needs, interests and worldviews.

7.
Palliat Med ; 38(5): 555-571, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38600058

RESUMEN

BACKGROUND: Telephone advice lines have been recommended internationally to support around-the-clock care for people living at home with advanced illness. While they undoubtedly support care, there is little evidence about what elements are needed for success. A national picture is needed to understand, improve and standardise service delivery/care. AIM: To explore telephone advice lines for people living at home with advanced illness across the four UK nations, and to construct a practical framework to improve services. DESIGN: A cross-national evaluation of telephone advice lines using structured qualitative interviews. A patient and public involvement workshop was conducted to refine the framework. SETTING/PARTICIPANTS: Professionals with responsibilities for how palliative care services are delivered and/or funded at a local or regional level, were purposively sampled. RESULTS: Seventy-one interviews were conducted, covering 60 geographical areas. Five themes were identified. Availability: Ten advice line models were described. Variation led to confusion about who to call and when. Accessibility, awareness and promotion: It was assumed that patients/carers know who to call out-of-hours, but often they did not. Practicalities: Call handlers skills/expertise varied, which influenced how calls were managed. Possible responses ranged from signposting to organising home visits. Integration/continuity of care: Integration between care providers was limited by electronic medical records access/information sharing. Service structure/commissioning: Sustained funding was often an issue for charitably funded organisations. CONCLUSIONS: Our novel evidence-based practical framework could be transformative for service design/delivery, as it presents key considerations relating to the various elements of advice lines that may impact on the patient/carer experience.


Asunto(s)
Cuidadores , Cuidados Paliativos , Investigación Cualitativa , Humanos , Cuidadores/psicología , Reino Unido , Adulto , Servicios de Atención de Salud a Domicilio , Femenino , Líneas Directas , Masculino , Teléfono
8.
PLoS One ; 19(2): e0289522, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38422036

RESUMEN

BACKGROUND: Serious illness is characterised by uncertainty, particularly in older age groups. Uncertainty may be experienced by patients, family carers, and health professionals about a broad variety of issues. There are many evidence gaps regarding the experience and management of uncertainty. AIM: We aimed to identify priority research areas concerning uncertainty in serious illness, to ensure that future research better meets the needs of those affected by uncertainty and reduce research inefficiencies. METHODS: Rapid prioritisation workshop comprising five focus groups to identify research areas, followed by a ranking exercise to prioritise them. Participants were healthcare professionals caring for those with serious illnesses including geriatrics, palliative care, intensive care; researchers; patient/carer representatives, and policymakers. Descriptive analysis of ranking data and qualitative framework analysis of focus group transcripts was undertaken. RESULTS: Thirty-four participants took part; 67% female, mean age 47 (range 33-67). The highest priority was communication of uncertainty, ranked first by 15 participants (overall ranking score 1.59/3). Subsequent priorities were: 2) How to cope with uncertainty; 3) healthcare professional education/training; 4) Optimising clinical approaches to uncertainty; and 5) exploring in-depth experiences of uncertainty. Research questions regarding optimal management of uncertainty were given higher priority than questions about experiences of uncertainty and its impact. CONCLUSIONS: These co-produced, clinically-focused research priorities map out key evidence gaps concerning uncertainty in serious illness. Managing uncertainty is the most pressing issue, and researchers should prioritise how to optimally manage uncertainty in order to reduce distress, unlock decision paralysis and improve illness and care experience.


Asunto(s)
Investigadores , Investigación , Humanos , Femenino , Anciano , Persona de Mediana Edad , Masculino , Consenso , Incertidumbre , Comunicación
9.
BMJ Support Palliat Care ; 13(e3): e612-e623, 2024 Jan 08.
Artículo en Inglés | MEDLINE | ID: mdl-37236648

RESUMEN

BACKGROUND: The anticipatory prescribing of injectable medications is recommended practice in controlling distressing symptoms in the last days of life. A 2017 systematic review found practice and guidance was based on inadequate evidence. Since then, there has been considerable additional research, warranting a new review. AIM: To review the evidence published since 2017 concerning anticipatory prescribing of injectable medications for adults at the end-of-life in the community, to inform practice and guidance. DESIGN: Systematic review and narrative synthesis. METHODS: Nine literature databases were searched from May 2017 to March 2022, alongside reference, citation and journal hand-searches. Gough's Weight of Evidence framework was used to appraise included studies. RESULTS: Twenty-eight papers were included in the synthesis. Evidence published since 2017 shows that standardised prescribing of four medications for anticipated symptoms is commonplace in the UK; evidence of practices in other countries is limited. There is limited data on how often medications are administered in the community. Prescriptions are 'accepted' by family caregivers despite inadequate explanations and they generally appreciate having access to medications. Robust evidence of the clinical and cost-effectiveness of anticipatory prescribing remains absent. CONCLUSION: The evidence underpinning anticipatory prescribing practice and policy remains based primarily on healthcare professionals' perceptions that the intervention is reassuring, provides effective, timely symptom relief in the community and prevents crisis hospital admissions. There is still inadequate evidence regarding optimal medications and dose ranges, and the effectiveness of these prescriptions. Patient and family caregiver experiences of anticipatory prescriptions warrant urgent investigation. PROSPERO REGISTRATION: CRD42016052108.


Asunto(s)
Cuidados Paliativos al Final de la Vida , Cuidado Terminal , Humanos , Cuidadores
10.
BJGP Open ; 2024 Mar 19.
Artículo en Inglés | MEDLINE | ID: mdl-37993135

RESUMEN

BACKGROUND: Globally, the COVID-19 pandemic has caused unprecedented strain in healthcare systems, but little is known about how it affected patients requiring palliative and end-of-life care from GPs. AIM: To evaluate the impact of the pandemic on primary care service use in the last 3 months of life, including consultations and prescribing, and to identify associated factors. DESIGN AND SETTING: A retrospective cohort study in UK, using data from the Clinical Practice Research Datalink. METHOD: The study cohort included those who died between 2019 and 2020. Poisson regression models using generalised estimation equations were used to examine the association between primary care use and patient characteristics. Adjusted rate ratios (aRRs) and 95% confidence intervals (95% CIs) were estimated. RESULTS: A total of 44 534 patients died during the study period. The pandemic period was associated with an 8.9% increase in the rate of consultations from 966.4 to 1052.9 per 1000 person-months, and 14.3% longer telephone consultation duration (from 10.1 to 11.5 minutes), with a switch from face-to-face to telephone or video consultations. The prescription of end-of-life care medications increased by 6.3%, from 1313.7 to 1396.3 per 1000 person-months. The adjusted rate ratios for consultations (aRR = 1.08, 95% CI = 1.06 to 1.10, P<0.001) and prescriptions (aRR 1.05: 95% CI = 1.03 to 1.07, P<0.001) also increased during the pandemic. CONCLUSION: The pandemic had a major impact on GP service use, leading to longer consultations, shifts from face-to-face to telephone or video consultations, and increased prescriptions. GP workload-related issues must be addressed urgently to ease the pressure on GPs.

12.
F1000Res ; 12: 224, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37942019

RESUMEN

Background: Despite the development of patient-centred or patient-reported outcome measures (PCOMs or PROMs) in palliative and end-of-life care over recent years, their routine use in practice faces continuing challenges. Objective: To update a highly cited literature review, identify and synthesise new evidence on facilitators, barriers, lessons learned, PCOMs used, models of implementation, implementation outcomes, costs, and consequences of implementing PCOMs in palliative care clinical practice. Methods: We will search MEDLINE, PsycINFO, CINAHL, Embase, Emcare, SCI-Expanded, SSCI, ESCI, and BNI. The database search will be supplemented by a list of studies from the expert advisory committee, hand-searching of reference lists for included articles, and citations of the original review. We will include primary studies using a PCOM during clinical care of adult patients with advanced disease in palliative care settings and extract data on reported models of implementation, PCOMs, facilitators, barriers, lessons learned, costs, and implementation outcomes. Gough's Weight of Evidence Framework will be used to assess the robustness and relevance of the studies. We will narratively synthesise and tabulate the findings. This review will follow PRISMA, PRISMA-Abstract, PRISMA-P, and PRISMA-Search as the reporting guidelines. Source of funding: Marie Curie. The funder is not involved in designing or conducting this study. Protocol registration: CRD42023398653 (13/02/2023).


Asunto(s)
Evaluación de Resultado en la Atención de Salud , Cuidados Paliativos , Humanos , Adulto , Cuidados Paliativos/métodos , Revisiones Sistemáticas como Asunto , Metaanálisis como Asunto , Literatura de Revisión como Asunto
13.
BMJ Open Gastroenterol ; 10(1)2023 11.
Artículo en Inglés | MEDLINE | ID: mdl-37989352

RESUMEN

OBJECTIVE: The COVID-19 pandemic had an undoubted impact on the provision of elective and emergency cancer care, including the diagnosis and management of patients with hepatocellular carcinoma (HCC). Our aim was to determine the effects of the COVID-19 pandemic on patients with HCC in the West of Scotland. DESIGN: This was a retrospective audit of a prospectively collated database of patients presented to the West of Scotland Multidisciplinary Team (MDT) between April and October 2020 (during the pandemic), comparing baseline demographics, characteristics of disease at presentation, diagnostic workup, treatment and outcomes with patients from April to October 2019 (pre pandemic). RESULTS: There was a 36.5% reduction in new cases referred to the MDT during the pandemic. Patients presented at a significantly later Barcelona Cancer Liver Clinic stage (24% stage D during the pandemic, 9.5% pre pandemic, p<0.001) and with a significantly higher Child-Pugh Score (46% Child-Pugh B/C during the pandemic vs 27% pre pandemic, p<0.001). We observed a reduction in overall survival (OS) among all patients with a median OS during the pandemic of 6 months versus 17 months pre pandemic (p=0.048). CONCLUSION: The impact of the COVID-19 pandemic is likely to have contributed to a reduction in the presentation of new cases and survival among patients with HCC in the West of Scotland. The reason for this is likely multifactorial, but disruption of standard care is likely to have played a significant role. Resources should be provided to address the backlog and ensure there are robust investigation and management pathways going forward.


Asunto(s)
COVID-19 , Carcinoma Hepatocelular , Neoplasias Hepáticas , Humanos , Carcinoma Hepatocelular/epidemiología , Neoplasias Hepáticas/epidemiología , Neoplasias Hepáticas/patología , Pandemias , Estudios de Cohortes , Estudios Retrospectivos , COVID-19/epidemiología
14.
Palliat Med ; 37(10): 1529-1539, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37864507

RESUMEN

BACKGROUND: Hospice-at-home aims to enable patients approaching end-of-life to die at home and support their carers. A wide range of different service models exists but synthesised evidence on how best to support family carers to provide sustainable end-of-life care at home is limited. AIM: To explore what works best to promote family carers' experiences of hospice-at-home. DESIGN: Realist evaluation with mixed methods. This paper focuses on qualitative interviews with carers (to gain their perspective and as proxy for patients) and service providers from 12 case study sites in England. Interviews were coded and programme theories were refined by the research team including two public members. SETTING/PARTICIPANTS: Interviews with carers (involved daily) of patients admitted to hospice-at-home services (n = 58) and hospice-at-home staff (n = 78). RESULTS: Post bereavement, 76.4% of carers thought that they had received as much help and support as they needed and most carers (75.8%) rated the help and support as excellent or outstanding. Of six final programme theories capturing key factors relevant to providing optimum services, those directly relevant to carer experiences were: integration and co-ordination of services; knowledge, skills and ethos of hospice staff; volunteer roles; support directed at the patient-carer dyad. CONCLUSIONS: Carers in hospice-at-home services identified care to be of a higher quality than generic community services. Hospice staff were perceived as having 'time to care', communicated well and were comfortable with dying and death. Hands-on care was particularly valued in the period close to death.


Asunto(s)
Servicios de Atención de Salud a Domicilio , Cuidados Paliativos al Final de la Vida , Cuidado Terminal , Humanos , Cuidadores , Cuidados Paliativos/métodos
15.
Palliat Med ; 37(10): 1554-1561, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37817429

RESUMEN

BACKGROUND: The prescribing of injectable end-of-life anticipatory medications ahead of possible need is recommended best practice. The financial costs of these medications have been little studied. AIM: To identify the costs of anticipatory medications prescribed, used and not used for patients approaching the end-of-life at home and in residential care. DESIGN: Retrospective observational study using general practitioner and community nursing clinical records. SETTING/PARTICIPANTS: Data were collected from eleven general practitioner practices using the records of the 30 most recent deaths per practice. Patients were aged 18+ and died between 2017 and 2019 from any cause except trauma, sudden death or suicide. RESULTS: Anticipatory medications were prescribed to 167/329 patients, of which 164 were included in the analysis. Costs (GBP) were analysed both at patient-level and drug-level. Median anticipatory prescription cost was £43.17 (IQR: £38.98-£60.47, range £8.76-£229.82). Median administered (used) drug cost was £2.16 (IQR: £0.00-£12.09, range £0.00-£83.14). Median unused (wasted) drug cost was £41.47 (IQR: £29.15-£54.33, range £0.00-£195.36). Prescription, administered and unused costs were significantly higher for the 59 patients prescribed an anticipatory syringe driver. There were wide variations in the unused costs of individual drugs; Haloperidol and Cyclizine contributed 49% of total unused costs. CONCLUSION: The costs of prescribed and unused anticipatory medications were higher than previously reported but remain modest. Usage of prescriptions was lower than previously documented. There may be scope to reduce the quantity of vials that are routinely prescribed without adversely affecting care; further research is needed to investigate this possibility.


Asunto(s)
Prescripciones de Medicamentos , Médicos Generales , Humanos , Estudios Retrospectivos , Muerte
16.
BMJ ; 382: e074001, 2023 08 02.
Artículo en Inglés | MEDLINE | ID: mdl-37532284

RESUMEN

OBJECTIVES: To quantify mortality rates for patients successfully treated for hepatitis C in the era of interferon-free, direct acting antivirals and compare these rates with those of the general population. DESIGN: Population based cohort study. SETTING: British Columbia, Scotland, and England (England cohort consists of patients with cirrhosis only). PARTICIPANTS: 21 790 people who were successfully treated for hepatitis C in the era of interferon-free antivirals (2014-19). Participants were divided into three liver disease severity groups: people without cirrhosis (pre-cirrhosis), those with compensated cirrhosis, and those with end stage liver disease. Follow-up started 12 weeks after antiviral treatment completion and ended on date of death or 31 December 2019. MAIN OUTCOME MEASURES: Crude and age-sex standardised mortality rates, and standardised mortality ratio comparing the number of deaths with that of the general population, adjusting for age, sex, and year. Poisson regression was used to identify factors associated with all cause mortality rates. RESULTS: 1572 (7%) participants died during follow-up. The leading causes of death were drug related mortality (n=383, 24%), liver failure (n=286, 18%), and liver cancer (n=250, 16%). Crude all cause mortality rates (deaths per 1000 person years) were 31.4 (95% confidence interval 29.3 to 33.7), 22.7 (20.7 to 25.0), and 39.6 (35.4 to 44.3) for cohorts from British Columbia, Scotland, and England, respectively. All cause mortality was considerably higher than the rate for the general population across all disease severity groups and settings; for example, all cause mortality was three times higher among people without cirrhosis in British Columbia (standardised mortality ratio 2.96, 95% confidence interval 2.71 to 3.23; P<0.001) and more than 10 times higher for patients with end stage liver disease in British Columbia (13.61, 11.94 to 15.49; P<0.001). In regression analyses, older age, recent substance misuse, alcohol misuse, and comorbidities were associated with higher mortality rates. CONCLUSION: Mortality rates among people successfully treated for hepatitis C in the era of interferon-free, direct acting antivirals are high compared with the general population. Drug and liver related causes of death were the main drivers of excess mortality. These findings highlight the need for continued support and follow-up after successful treatment for hepatitis C to maximise the impact of direct acting antivirals.


Asunto(s)
Enfermedad Hepática en Estado Terminal , Hepatitis C Crónica , Hepatitis C , Humanos , Antivirales/uso terapéutico , Interferones/uso terapéutico , Estudios de Cohortes , Enfermedad Hepática en Estado Terminal/inducido químicamente , Enfermedad Hepática en Estado Terminal/complicaciones , Enfermedad Hepática en Estado Terminal/tratamiento farmacológico , Hepatitis C Crónica/tratamiento farmacológico , Hepatitis C/tratamiento farmacológico , Hepatitis C/complicaciones , Hepacivirus , Cirrosis Hepática/tratamiento farmacológico
17.
Artículo en Inglés | MEDLINE | ID: mdl-37402538

RESUMEN

OBJECTIVES: Travelling communities are a significant, but poorly understood, group of ethnic minorities known to experience inequalities in many aspects of healthcare, including at the end of life. This study explored the end of life care experiences and needs of Travellers, along with the perspectives of healthcare professionals. METHODS: Secondary thematic analysis of data from two focus groups and 16 interviews. Eighteen UK-based members of Travelling communities and three healthcare professionals took part in two focus groups. Sixteen hospice staff were interviewed. Data were collected by UK charity One Voice 4 Travellers in 2018. RESULTS: Tensions permeated the healthcare experience of Travellers. The perceived need for concealment of ethnic identity in the healthcare setting conflicted with participants' desire for personalised care and tailored services. Healthcare professionals' limited awareness of Travellers' cultural rituals around death led to difficulties, including misunderstandings relating to the large numbers of family gathered at the bedside of dying relatives in hospital and hospice settings. Approaches that could increase the acceptability of healthcare included Travellers working in liaison roles, increased provision of space for visiting family and cultural competency training for staff. However, challenges remain in converting ideal solutions into feasible changes. CONCLUSIONS: Improved communication and understanding between Travelling communities and healthcare professionals is needed to relieve the multilevel tensions experienced at the end of life. At an individual level, this would enable personalised care; at a systems level, cocreation of end of life care services with Travellers would help ensure that their cultural needs are met.

19.
Palliat Med ; 37(7): 1034-1039, 2023 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-37088955

RESUMEN

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.


Asunto(s)
COVID-19 , Humanos , Estudios Retrospectivos , Pandemias , Inglaterra/epidemiología , Gales/epidemiología
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