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1.
BMJ Support Palliat Care ; 13(e3): e1258-e1264, 2024 Jan 08.
Artigo em Inglês | MEDLINE | ID: mdl-37236649

RESUMO

OBJECTIVES: To understand individual prescribing and associated costs in patients managed with the Edinburgh Pain Assessment and management Tool (EPAT). METHODS: The EPAT study was a two-arm parallel group cluster randomised (1:1) trial, including 19 UK cancer centres. Study outcome assessments, including pain levels, analgesia and non-pharmacological and anaesthetic interventions, collected at baseline, 3-5 days and, if applicable, 7-10 days after admission. Costs calculated for inpatient length of stay (LoS), medications and complex pain interventions. Analysis accounted for the clustered nature of the trial design. In this post-hoc analysis, healthcare utilisation and costs are presented descriptively. PARTICIPANTS: 10 centres randomised to EPAT (487 patients) and 9 (449 patients) to usual care (UC). MAIN OUTCOME MEASURES: Pharmacological and non-pharmacological management, complex pain interventions, length of hospital stay and costs related to these outcomes. RESULTS: The mean per patient hospital cost was £3866 with EPAT and £4194 with UC, reflecting a mean LoS of 2.9 days and 3.1 days, respectively. Costs were lower for non-opioids, Non-steroidal anti-inflammatories (NSAIDs) and opioids but slightly higher for adjuvants with EPAT than with UC. The mean per-patient opioid costs were £17.90 (EPAT) and £25.80 (UC). Mean per patient costs of all medication were £36 (EPAT) and £40 (UC).Complex pain intervention costs were £117 with EPAT per patient and £90 with UC. Overall mean cost per patient was £4018.3 (95% CI 3698.9 to 4337.8) with EPAT and £4323.8 (95% CI 4060.0 to 4587.7) with UC. CONCLUSIONS: EPAT facilitated personalised medicine and may result in less opioids, more specific treatments, improved pain outcomes and cost savings.


Assuntos
Dor do Câncer , Custos de Cuidados de Saúde , Humanos , Analgésicos Opioides/uso terapêutico , Dor do Câncer/diagnóstico , Dor do Câncer/terapia , Hospitalização , Tempo de Internação , Manejo da Dor , Medição da Dor
2.
Am J Hosp Palliat Care ; : 10499091231219254, 2023 Nov 28.
Artigo em Inglês | MEDLINE | ID: mdl-38015873

RESUMO

AIMS: Cancer is a leading cause of death worldwide. Approximately 30% of global cancer-related deaths occur in mainland China. However, there is a paucity of information regarding the end-of-life care-seeking behavior of patients with advanced cancer in China. Our study was to investigate end-of-life care-seeking behavior and to quantify the association between sociodemographic characteristics and the location and pattern of end-of-life care. METHODS: We conducted a mortality follow-back survey using caregivers' interviews to estimate the number of individuals pre 1000 who died between 2013 and 2021 in the last 3 months of life. We collected data on hospitalization, outpatient visits, cardiopulmonary resuscitation, palliative care and hospice utilization, and place of death, stratified by age, gender, marital status, household income, residential zone, insurance type, and the primary end-of-life decision-maker of the decedents. RESULTS: We analyzed data from 857 deceased cancer patients, representing an average of 1000 individuals. Among these patients, 861 experienced at least moderate or more severe pain, 774 were hospitalized at least once, 468 received intensive treatment, 389 had at least one outpatient visit, 270 died in the hospital, 236 received cardiopulmonary resuscitation and 99 received specialist hospice care. CONCLUSIONS: Our study provides insights into the end-of-life care-seeking behavior of advanced cancer patients in China and our findings serve as a useful benchmark for estimating the use of end-of-life medical care. It highlights the need for the establishment of an accessible and patient-centered palliative care and hospice system.

3.
Palliat Med ; 37(10): 1529-1539, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37864507

RESUMO

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.


Assuntos
Serviços de Assistência Domiciliar , Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Humanos , Cuidadores , Cuidados Paliativos/métodos
4.
BMJ Support Palliat Care ; 13(2): 255-262, 2023 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-36379689

RESUMO

OBJECTIVES: Extending palliative care services to those with long-term neurological conditions is a current aim of UK health policy. Lack of holistic guidelines for palliative and end-of-life care, and differing models of service provision, has resulted in heterogeneity in care access and quality. There is a need for evidence-based standards of care to audit Parkinson's services and drive improvements. METHODS: A two-stage Delphi process was used to achieve consensus on statements that define quality standards in palliative care for patients with Parkinson's disease (PD). An expert panel was selected to comprise healthcare professionals, patients and carers based in the UK; this panel evaluated the statements via a Delphi survey. Quantitative and qualitative analysis of the results informed modifications between the Delphi rounds. RESULTS: A final set of 16 statements was produced, reflecting aspirational standards of palliative care in PD. These statements, split into four domains ('Structures and processes of care', 'Preparing for the end of life', ' Care in the last weeks of life' and 'Care in the last days of life') underline the importance of joint working between generalist and specialist services, individualised care and early and regular advance care planning. CONCLUSIONS: The Delphi process has established a set of standards which can be integrated within and guide services, helping to improve the quality and equality of care. Further work remains to establish the effectiveness of different models of service provision, including the implementation of keyworkers and telemedicine.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Doença de Parkinson , Humanos , Cuidados Paliativos , Doença de Parkinson/terapia , Técnica Delphi , Qualidade da Assistência à Saúde
5.
BMJ Support Palliat Care ; 12(e6): e862-e868, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31722983

RESUMO

BACKGROUND: Palliative and end-of-life care is a core competency for doctors and is increasingly recognised as a key clinical skill for junior doctors. There is a growing international movement to embed palliative care education in medical student and junior doctor education. To date there has been no review of the literature concerning the views and experiences of junior doctors delivering this care. AIM: To review the published literature between 2000 and 2019 concerning junior doctors' experience of palliative and end-of-life care. METHODS: Systematic literature review and narrative synthesis. RESULTS: A search of six databases identified 7191 titles; 34 papers met the inclusion criteria, with a further 5 identified from reference searching. Data were extracted into a review-specific extraction sheet and a narrative synthesis undertaken. Three key themes were identified: (1) 'Significance of death and dying': all papers found that junior doctors care for many patients approaching the end of life, and this often causes emotional distress and can leave persisting memories for many years afterwards; (2) 'Thrown in at the deep end': junior doctors feel unprepared and unsupported in providing palliative and end-of-life care; and (3) 'Addressing the gaps': junior doctors often experience a medical culture of disengagement towards dying patients and varying attitudes of senior doctors. Subsequently they have to learn the skills needed through seeking their own opportunities. CONCLUSION: Medical education needs to change in order to better prepare and support junior doctors for their role in caring for dying patients. This education needs to focus on their knowledge, skills and attitudes.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Humanos , Cuidados Paliativos/psicologia , Pesquisa Qualitativa , Corpo Clínico Hospitalar/educação
6.
Dialogues Health ; 1: 100006, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-38515871

RESUMO

Background: With the high prevalence of hypertension, it is important to determine its predictors early. The aim of this study was to determine the association between blood pressure with anthropometric indices and birth weight among a population of Malay adolescents in Kuala Lumpur. Design and methods: This cross-sectional study was carried out among 254 primary and secondary school adolescents aged 10 to 16 years. Anthropometric measurements and blood pressure were determined through standardized protocols, while participants' birth weight was obtained from birth certificate. Body mass index (BMI), waist-to-hip ratio (WHR), waist-to-height ratio (WHtR) and a body shape index (ABSI) were calculated. Results: Boys had significantly higher weight, height, WC, WHtR and systolic blood pressure (SBP) than girls (p < 0.05). SBP was moderately correlated with body weight (r = 0.60), WC (r = 0.55), BMI (r = 0.54), height (r = 0.47), WHtR (rs = 0.36) and WHR (r = 0.30). Moderate correlations were found between diastolic blood pressure (DBP) with BMI (r = 0.26), WC (r = 0.23) and body weight (r = 0.20). Participants with BMI > +1SD had higher odds of being prehypertensive or hypertensive (aOR 8.97; 95% CI 3.16, 25.48), followed by participants with WC ≥ 90th percentile (aOR 6.31; 95% CI 2.48, 16.01) and participants with WHtR > 0.5 (aOR 5.10; 95% CI 2.05, 12.69). Multiple linear regression showed BMI was positively associated with both SBP and DBP. No significant association was found between birth weight and BP. Conclusion: BMI had the best predictive ability for SBP and DBP. These findings strongly emphasize the importance of primary prevention of hypertension in adolescents, especially among those with high BMI.

7.
BMC Palliat Care ; 20(1): 89, 2021 Jun 23.
Artigo em Inglês | MEDLINE | ID: mdl-34162377

RESUMO

BACKGROUND: As the demand for palliative care increases, more information is needed on how efficient different types of palliative care models are for providing care to dying patients and their caregivers. Evidence on the economic value of treatments and interventions is key to informing resource allocation and ultimately improving the quality and efficiency of healthcare delivery. We assessed the available evidence on the economic value of palliative and end-of-life care interventions across various settings. METHODS: Reviews published between 2000 and 2019 were included. We included reviews that focused on cost-effectiveness, intervention costs and/or healthcare resource use. Two reviewers extracted data independently and in duplicate from the included studies. Data on the key characteristics of the studies were extracted, including the aim of the study, design, population, type of intervention and comparator, (cost-) effectiveness resource use, main findings and conclusions. RESULTS: A total of 43 reviews were included in the analysis. Overall, most evidence on cost-effectiveness relates to home-based interventions and suggests that they offer substantial savings to the health system, including a decrease in total healthcare costs, resource use and improvement in patient and caregivers' outcomes. The evidence of interventions delivered across other settings was generally inconsistent. CONCLUSIONS: Some palliative care models may contribute to dual improvement in quality of care via lower rates of aggressive medicalization in the last phase of life accompanied by a reduction in costs. Hospital-based palliative care interventions may improve patient outcomes, healthcare utilization and costs. There is a need for greater consistency in reporting outcome measures, the informal costs of caring, and costs associated with hospice.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Cuidadores , Morte , Humanos , Cuidados Paliativos
8.
Br J Gen Pract ; 71(708): e550-e560, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33947665

RESUMO

BACKGROUND: Advance care planning (ACP) can improve the quality of life of patients suffering from heart failure (HF). However, primary care healthcare professionals (HCPs) find ACP difficult to engage with and patient care remains suboptimal. AIM: To explore the views of primary care HCPs on how to improve their engagement with ACP in HF. DESIGN AND SETTING: A qualitative interview study with GPs and primary care nurses in England. METHOD: Semi-structured interviews were conducted with a purposive sample of 24 primary care HCPs. Data were analysed using reflexive thematic analysis. RESULTS: Three main themes were constructed from the data: ACP as integral to holistic care in HF; potentially limiting factors to the doctor-patient relationship; and approaches to improve professional performance. Many HCPs saw the benefits of ACP as synonymous with providing holistic care and improving patients' quality of life. However, some feared that initiating ACP could irrevocably damage their doctor-patient relationship. Their own fear of death and dying, a lack of disease-specific communication skills, and uncertainty about the right timing were significant barriers to ACP. To optimise their engagement with ACP in HF, HCPs recommended better clinician-patient dialogue through question prompts, enhanced shared decision-making approaches, synchronising ACP across medical specialties, and disease-specific training. CONCLUSION: GPs and primary care nurses are vital to deliver ACP for patients suffering from HF. HCPs highlighted important areas to improve their practice and the urgent need for investigations into better clinician-patient engagement with ACP.


Assuntos
Planejamento Antecipado de Cuidados , Insuficiência Cardíaca , Insuficiência Cardíaca/terapia , Humanos , Relações Médico-Paciente , Atenção Primária à Saúde , Pesquisa Qualitativa , Qualidade de Vida
10.
Cochrane Database Syst Rev ; 3: CD009231, 2021 03 16.
Artigo em Inglês | MEDLINE | ID: mdl-33721912

RESUMO

BACKGROUND: The policy several countries is to provide people with a terminal illness the choice of dying at home; this is supported by surveys that indicate that the general public and people with a terminal illness would prefer to receive end-of-life care at home. This is the fifth update of the original review. OBJECTIVES: To determine if providing home-based end-of-life care reduces the likelihood of dying in hospital and what effect this has on patients' symptoms, quality of life, health service costs and caregivers compared with inpatient hospital or hospice care. SEARCH METHODS: We searched CENTRAL, Ovid MEDLINE(R), Embase, CINAHL, and clinical trials registries to 18 March 2020. We checked the reference lists of systematic reviews. For included studies, we checked the reference lists and performed a forward search using ISI Web of Science. We handsearched palliative care journals indexed by ISI Web of Science for online first references. SELECTION CRITERIA: Randomised controlled trials evaluating the effectiveness of home-based end-of-life care with inpatient hospital or hospice care for people aged 18 years and older. DATA COLLECTION AND ANALYSIS: Two review authors independently extracted data and assessed study quality. When appropriate, we combined published data for dichotomous outcomes using a fixed-effect Mantel-Haenszel meta-analysis to calculate risk ratios (RR) with 95% confidence intervals (CI). When combining outcome data was not possible, we reported the results from individual studies. MAIN RESULTS: We included four randomised trials and found no new studies from the search in March 2020. Home-based end-of-life care increased the likelihood of dying at home compared with usual care (RR 1.31, 95% CI 1.12 to 1.52; 2 trials, 539 participants; I2 = 25%; high-certainty evidence). Admission to hospital varied among the trials (range of RR 0.62, 95% CI 0.48 to 0.79, to RR 2.61, 95% CI 1.50 to 4.55). The effect on patient outcomes and control of symptoms was uncertain. Home-based end-of-life care may slightly improve patient satisfaction at one-month follow-up, with little or no difference at six-month follow-up (2 trials; low-certainty evidence). The effect on caregivers (2 trials; very low-certainty evidence), staff (1 trial; very low-certainty evidence) and health service costs was uncertain (2 trials, very low-certainty evidence). AUTHORS' CONCLUSIONS: The evidence included in this review supports the use of home-based end-of-life care programmes for increasing the number of people who will die at home. Research that assesses the impact of home-based end-of-life care on caregivers and admissions to hospital would be a useful addition to the evidence base, and might inform the delivery of these services.


Assuntos
Atitude Frente a Morte , Serviços de Assistência Domiciliar , Cuidados Paliativos na Terminalidade da Vida/psicologia , Preferência do Paciente/psicologia , Idoso , Atitude do Pessoal de Saúde , Viés , Cuidadores/psicologia , Feminino , Acessibilidade aos Serviços de Saúde , Hospitalização , Humanos , Masculino , Pessoa de Meia-Idade , Ensaios Clínicos Controlados Aleatórios como Assunto , Características de Residência/estatística & dados numéricos , Fatores de Tempo
11.
BMJ Support Palliat Care ; 11(4): 454-460, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31722982

RESUMO

OBJECTIVE: Hospice at Home (HAH) services aim to enable patients to be cared for and die at home, if that is their choice and achieve a 'good death'. A national survey, in 2017, aimed to describe and compare the features of HAH services and understand key enablers to service provision. METHODS: Service managers of adult HAH services in the 'Hospice UK' and National Association for Hospice at Home directories within England were invited to participate. Information on service configuration, referral, staffing, finance, care provision and enablers to service provision were collected by telephone interview. RESULTS: Of 128 services invited, 70 (54.7%) provided data. Great diversity was found. Most services operated in mixed urban/rural (74.3%) and mixed deprivation (77.1%) areas and provided hands-on care (97.1%), symptom assessment and management (91.4%), psychosocial support (94.3%) and respite care (74.3%). Rapid response (within 4 hours) was available in 65.7%; hands-on care 24 hours a day in 52.2%. Charity donations were the main source of funding for 71.2%. Key enablers for service provision included working with local services (eg, district nursing, general practitioner services), integrated health records, funding and anticipatory care planning. Access to timely medication and equipment was critical. CONCLUSION: There is considerable variation in HAH services in England. Due to this variation it was not possible to categorise services into delivery types. Services work to supplement local care using a flexible approach benefitting from integration and funding. Further work defining service features related to patient and/or carer outcomes would support future service development.


Assuntos
Serviços de Assistência Domiciliar , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Adulto , Cuidadores , Inglaterra , Humanos
12.
Ann Behav Med ; 55(5): 383-398, 2021 05 06.
Artigo em Inglês | MEDLINE | ID: mdl-32926081

RESUMO

BACKGROUND: National and international guidelines recommend advance care planning (ACP) for patients with heart failure. But clinicians seem hesitant to engage with ACP. PURPOSE: Our aim was to identify behavioral interventions with the greatest potential to engage clinicians with ACP in heart failure. METHODS: A systematic review and meta-analysis. We searched CINAHL, Cochrane Central Register of Controlled Trials, Database of Systematic Reviews, Embase, ERIC, Ovid MEDLINE, Science Citation Index, and PsycINFO for randomized controlled trials (RCTs) from inception to August 2018. Three reviewers independently extracted data, assessed risk of bias (Cochrane risk of bias tool), the quality of evidence (Grading of Recommendation Assessment, Development, and Evaluation), and intervention synergy according to the behavior change wheel and behavior change techniques (BCTs). Odds ratios (ORs) were calculated for pooled effects. RESULTS: Of 14,483 articles screened, we assessed the full text of 131 studies. Thirteen RCTs including 3,709 participants met all of the inclusion criteria. The BCTs of prompts/cues (OR: 4.18; 95% confidence interval [CI]: 2.03-8.59), credible source (OR: 3.24; 95% CI: 1.44-7.28), goal setting (outcome; OR: 2.67; 95% CI: 1.56-4.57), behavioral practice/rehearsal (OR: 2.64; 95% CI: 1.50-4.67), instruction on behavior performance (OR: 2.49; 95% CI: 1.63-3.79), goal setting (behavior; OR: 2.12; 95% CI: 1.57-2.87), and information about consequences (OR: 2.06; 95% CI: 1.40-3.05) showed statistically significant effects to engage clinicians with ACP. CONCLUSION: Certain BCTs seem to improve clinicians' practice with ACP in heart failure and merit consideration for implementation into routine clinical practice.


Assuntos
Planejamento Antecipado de Cuidados/normas , Terapia Comportamental , Insuficiência Cardíaca/psicologia , Médicos/psicologia , Padrões de Prática Médica/normas , Humanos
13.
BMJ Support Palliat Care ; 11(1): 4-6, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-31467067
14.
J Patient Exp ; 7(4): 621-628, 2020 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-33062887

RESUMO

BACKGROUND: Recognizing dying patients is crucial to produce outcomes that are satisfactory to patients, their families, and clinicians. AIM: Earlier discussion of and shared decision-making around dying to improve these outcomes. DESIGN: In this study, we interviewed 16 senior clinicians to develop summaries of palliative care in 4 key specialties: Cardiology, Vascular Surgery, Emergency General Surgery, and Intensive Care. SETTING: Oxford University Hospitals. RESULTS: Based on themes common to our 4 clinical areas, we developed a novel diagnostic framework to support shared palliative decision-making that can be summarized as follows: 1) Is the acute pathology reversible? 2) What is the patient's physiological reserve? 3) What is important to the patient? Will they be fit enough for discharge for a reasonable length of time? CONCLUSIONS: We believe that education using this framework in the medical school and postgraduate curricula would significantly improve recognition of dying patients. This would serve to stimulate earlier conversations, more shared decision-making, and ultimately better outcomes in palliative care and patient experience.

15.
Health Technol Assess ; 24(25): 1-150, 2020 05.
Artigo em Inglês | MEDLINE | ID: mdl-32484432

RESUMO

BACKGROUND: Most people who are dying want to be cared for at home, but only half of them achieve this. The likelihood of a home death often depends on the availability of able and willing lay carers. When people who are dying are unable to take oral medication, injectable medication is used. When top-up medication is required, a health-care professional travels to the dying person's home, which may delay symptom relief. The administration of subcutaneous medication by lay carers, although not widespread UK practice, has proven to be key in achieving better symptom control for those dying at home in other countries. OBJECTIVES: To determine if carer administration of as-needed subcutaneous medication for common breakthrough symptoms in people dying at home is feasible and acceptable in the UK, and if it would be feasible to test this intervention in a future definitive randomised controlled trial. DESIGN: We conducted a two-arm, parallel-group, individually randomised, open pilot trial of the intervention versus usual care, with a 1 : 1 allocation ratio, using convergent mixed methods. SETTING: Home-based care without 24/7 paid care provision, in three UK sites. PARTICIPANTS: Participants were dyads of adult patients and carers: patients in the last weeks of their life who wished to die at home and lay carers who were willing to be trained to give subcutaneous medication. Strict risk assessment criteria needed to be met before approach, including known history of substance abuse or carer ability to be trained to competency. INTERVENTION: Intervention-group carers received training by local nurses using a manualised training package. MAIN OUTCOME MEASURES: Quantitative data were collected at baseline and 6-8 weeks post bereavement and via carer diaries. Interviews with carers and health-care professionals explored attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The main outcomes of interest were feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures. RESULTS: In total, 40 out of 101 eligible dyads were recruited (39.6%), which met the feasibility criterion of recruiting > 30% of eligible dyads. The expected recruitment target (≈50 dyads) was not reached, as fewer than expected participants were identified. Although the overall retention rate was 55% (22/40), this was substantially unbalanced [30% (6/20) usual care and 80% (16/20) intervention]. The feasibility criterion of > 40% retention was, therefore, considered not met. A total of 12 carers (intervention, n = 10; usual care, n = 2) and 20 health-care professionals were interviewed. The intervention was considered acceptable, feasible and safe in the small study population. The context of the feasibility study was not ideal, as district nurses were seriously overstretched and unfamiliar with research methods. A disparity in readiness to consider the intervention was demonstrated between carers and health-care professionals. Findings showed that there were methodological and ethics issues pertaining to researching last days of life care. CONCLUSION: The success of a future definitive trial is uncertain because of equivocal results in the progression criteria, particularly poor recruitment overall and a low retention rate in the usual-care group. Future work regarding the intervention should include understanding the context of UK areas where this has been adopted, ascertaining wider public views and exploring health-care professional views on burden and risk in the NHS context. There should be consideration of the need for national policy and of the most appropriate quantitative outcome measures to use. This will help to ascertain if there are unanswered questions to be studied in a trial. TRIAL REGISTRATION: Current Controlled Trials ISRCTN11211024. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 25. See the NIHR Journals Library website for further project information.


Most people in the UK would prefer to die at home, but only half of them achieve this. This usually depends on having able and willing lay carers (family or friends) to help look after them. Once swallowing is not possible, medicine is given continually under the skin (syringe driver). If common problems such as pain, vomiting or agitation break through, health-care professionals attend to give extra doses. The wait for a health-care professional to arrive can be distressing. In the UK, it is legal (but not routine) for lay carers to give needle-free subcutaneous injections themselves. We reworked an Australian carer education package for UK use. The best way to find out if this would work well is to do a randomised controlled trial. This is a test in which, at random, half of the people taking part receive 'usual care' and the other half receive the 'new care' or intervention. A pilot randomised controlled trial (a 'test' trial to see if a larger one is worth doing) was carried out to determine if lay carer injections were possible in the UK. We approached 90 dyads (a dying person and a key carer) and, of these, 40 were willing to take part and 22 completed the follow-up visit, so we could analyse their data. Of these 22 dyads, 16 were in the intervention group (lay carer injects) and six were in the control group (usual care). All carers were asked to keep a diary. Carers and health-care professionals were interviewed (qualitative study) and carer preferences were assessed. This new practice was safe, acceptable and welcomed. Carer confidence increased rapidly, symptom control was quicker and the interviews backed up these findings. Recruitment was low owing to overstretched health-care professionals. Only certain families were picked. Dyads in the usual-care group often wished they were in the intervention group. Carers found it difficult to complete some of the questionnaires that were used to measure the effect of the intervention. Therefore, uncertainty remains as to whether or not a full trial should proceed. Because the practice is already legal, some areas in the UK are already undertaking it. We plan to study what makes this practice possible or less possible to achieve.


Assuntos
Cuidadores , Serviços de Assistência Domiciliar , Injeções Subcutâneas/enfermagem , Adesão à Medicação , Doente Terminal , Adulto , Cuidadores/educação , Cuidadores/psicologia , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde , Inquéritos e Questionários , Assistência Terminal , Reino Unido
16.
J Pain Symptom Manage ; 60(4): 754-764, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32387576

RESUMO

CONTEXT: The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. OBJECTIVE: The main objective of this article is to present the research behind the new definition. METHODS: The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. RESULTS: The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. CONCLUSION: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Consenso , Humanos , Cuidados Paliativos , Qualidade de Vida
17.
BMJ Support Palliat Care ; 10(3): 271-275, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-32457086

RESUMO

During the Covid-19 pandemic, a strategy to minimise face-to-face (FtF) visits and limit viral spread is essential. Video consultations offer clinical assessment despite restricted movement of people.We undertook a rapid literature review to identify the highest currently available level of evidence to inform this major change in clinical practice. We present a narrative synthesis of the one international and one national guideline and two systematic reviews-all published within the last 18 months.The global evidence appears to support video consultations as an effective, accessible, acceptable and cost-effective method of service delivery. Organisations must ensure software is simple, effective, reliable and safe, with the highest level of security for confidentiality.Although video consultations cannot fully replace FtF, they can radically reduce the need for FtF and the risk of Covid-19 spread in our communities while maintaining high standards of care. For patient safety, it will be critical to follow the WHO guidance regarding: a standard operating procedure; clinical protocols for when video consultations can (and cannot) be used; policies to ensure equity of access in disadvantaged populations; adequate staff training; and administrative support to coordinate appointments.


Assuntos
Medicina Paliativa/métodos , Telemedicina/métodos , Comunicação por Videoconferência , Betacoronavirus , COVID-19 , Infecções por Coronavirus/epidemiologia , Atenção à Saúde , Humanos , Pandemias , Pneumonia Viral/epidemiologia , Lacunas da Prática Profissional , Encaminhamento e Consulta , SARS-CoV-2 , Reino Unido
18.
BMC Palliat Care ; 19(1): 24, 2020 Feb 27.
Artigo em Inglês | MEDLINE | ID: mdl-32103745

RESUMO

BACKGROUND: Hospitalisation during the last weeks of life when there is no medical need or desire to be there is distressing and expensive. This study sought palliative care initiatives which may avoid or shorten hospital stay at the end of life and analysed their success in terms reducing bed days. METHODS: Part 1 included a search of literature in PubMed and Google Scholar between 2013 and 2018, an examination of governmental and organisational publications plus discussions with external and co-author experts regarding other sources. This initial sweep sought to identify and categorise relevant palliative care initiatives. In Part 2, we looked for publications providing data on hospital admissions and bed days for each category. RESULTS: A total of 1252 abstracts were reviewed, resulting in ten broad classes being identified. Further screening revealed 50 relevant publications describing a range of multi-component initiatives. Studies were generally small and retrospective. Most researchers claim their service delivered benefits. In descending frequency, benefits identified were support in the community, integrated care, out-of-hours telephone advice, care home education and telemedicine. Nurses and hospices were central to many initiatives. Barriers and factors underpinning success were rarely addressed. CONCLUSIONS: A wide range of initiatives have been introduced to improve end-of-life experiences. Formal evidence supporting their effectiveness in reducing inappropriate/non-beneficial hospital bed days was generally limited or absent. TRIAL REGISTRATION: N/A.


Assuntos
Hospitalização , Admissão do Paciente/normas , Humanos , Tempo de Internação/estatística & dados numéricos , Qualidade da Assistência à Saúde , Assistência Terminal/métodos , Assistência Terminal/normas
19.
J Gen Intern Med ; 35(3): 874-884, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-31720968

RESUMO

BACKGROUND: Advance care planning is widely advocated to improve outcomes in end-of-life care for patients suffering from heart failure. But until now, there has been no systematic evaluation of the impact of advance care planning (ACP) on clinical outcomes. Our aim was to determine the effect of ACP in heart failure through a meta-analysis of randomized controlled trials (RCTs). METHODS: We searched CINAHL, Cochrane Central Register of Controlled Trials, Database of Systematic Reviews, Embase, ERIC, Ovid MEDLINE, Science Citation Index and PsycINFO (inception to July 2018). We selected RCTs including adult patients with heart failure treated in a hospital, hospice or community setting. Three reviewers independently screened studies, extracted data, assessed the risk of bias (Cochrane risk of bias tool) and evaluated the quality of evidence (GRADE tool) and analysed interventions according to the Template for Intervention Description and Replication (TIDieR). We calculated standardized mean differences (SMD) in random effects models for pooled effects using the generic inverse variance method. RESULTS: Fourteen RCTs including 2924 participants met all of the inclusion criteria. There was a moderate effect in favour of ACP for quality of life (SMD, 0.38; 95% CI [0.09 to 0.68]), patients' satisfaction with end-of-life care (SMD, 0.39; 95% CI [0.14 to 0.64]) and the quality of end-of-life communication (SMD, 0.29; 95% CI [0.17 to 0.42]) for patients suffering from heart failure. ACP seemed most effective if it was introduced at significant milestones in a patient's disease trajectory, included family members, involved follow-up appointments and considered ethnic preferences. Several sensitivity analyses confirmed the statistically significant direction of effect. Heterogeneity was mainly due to different study settings, length of follow-up periods and compositions of ACP. CONCLUSIONS: ACP improved quality of life, patient satisfaction with end-of-life care and the quality of end-of-life communication for patients suffering from heart failure and could be most effective when the right timing, follow-up and involvement of important others was considered.


Assuntos
Planejamento Antecipado de Cuidados , Insuficiência Cardíaca , Assistência Terminal , Adulto , Humanos , Insuficiência Cardíaca/terapia , Qualidade de Vida
20.
Artigo em Inglês | MEDLINE | ID: mdl-31331916

RESUMO

BACKGROUND: Clinicians hesitate to engage with advance care planning (ACP) in heart failure. We aimed to identify the disease-specific barriers and facilitators for clinicians to engage with ACP. METHODS: We searched Medline, Embase, CINAHL, PubMed, Scopus, the British Nursing Index, the Cochrane Library, the EPOC register, ERIC, PsycINFO, the Science Citation Index and the Grey Literature from inception to July 2018. We conducted the review according to Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines. Two reviewers independently assessed original and empirical studies according to Critical Appraisal Skills Programme criteria. The SURE framework and thematic analysis were used to identify barriers and facilitators. RESULTS: Of 2308 articles screened, we reviewed the full text of 42 studies. Seventeen studies were included. The main barriers were lack of disease-specific knowledge about palliative care in heart failure, high emotional impact on clinicians when undertaking ACP and lack of multidisciplinary collaboration between healthcare professionals to reach consensus on when ACP is indicated. The main facilitators were being competent to provide holistic care when using ACP in heart failure, a patient taking the initiative of having an ACP conversation, and having the resources to deliver ACP at a time and place appropriate for the patient. CONCLUSIONS: Training healthcare professionals in the delivery of ACP in heart failure might be as important as enabling patients to start an ACP conversation. This twofold approach may mitigate against the high emotional impact of ACP. Complex interventions are needed to support clinicians as well as patients to engage with ACP.

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