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1.
Psychooncology ; 33(4): e6317, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38573227

RESUMO

INTRODUCTION: How to communicate effectively with adolescent and young adults with cancer (AYACs) is a research priority. In a UK-wide survey of young people with cancer's research priorities, communication was a striking cross-cutting theme. It is increasingly recognised that AYACs have experiences and communication needs that differ significantly from those of younger children and older adults. The purpose of this review is to explore the features of effective clinical communication with AYACs. METHODS: A literature search was undertaken to identify and map the available evidence using a broad scope to get an overview of the pertinent literature, identify knowledge gaps and clarify concepts. The searches yielded 5825 records, generating 4040 unique articles. These were screened and 71 full articles were read by four researchers with disagreements resolved by discussion leaving 29 included articles. Narrative synthesis was undertaken in relation to each of the research questions. RESULTS: Three key themes were identified: being an adolescent/young adult, supporters, and healthcare professionals (HCPs). AYACs need to feel that HCPs understand their unique perspective. They want to be involved, this changes over time and in different contexts. Supporters are a central tenet, are most often parents and undertake several roles which are not always universally supportive. HCPs enable involvement of AYACs, and this needs to be actively promoted. AYACs preference for their level of involvement requires continual assessment. The three themes are interlinked and exist within the wider scope of the triadic encounter and cancer experience. CONCLUSION: Supporters, most often parents were a key feature across the data and were seemingly paradoxical in nature. Triadic communication, the presence of a third person, is a central tenet of communication with AYACs and we propose a conceptual model to represent the nuances, components, and facets of this complex communication.


Assuntos
Comunicação , Neoplasias , Criança , Humanos , Adolescente , Adulto Jovem , Idoso , Narração , Emoções , Pessoal de Saúde , Neoplasias/terapia
2.
Health Soc Care Deliv Res ; 12(7): 1-104, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38551093

RESUMO

Background: Socio-economic inequalities in health have been in the public agenda for decades. General practice has an influential role to play in mitigating the impact of inequalities especially regarding chronic conditions. At the moment, general practice is dealing with serious challenges in relation to workforce shortages, increasing workload and the impact of the COVID-19 pandemic. It is important to identify effective ways so that general practice can play its role in reducing health inequalities. Objectives: We explored what types of interventions and aspects of routine care in general practice decrease or increase inequalities in health and care-related outcomes. We focused on cardiovascular disease, cancer, diabetes and/or chronic obstructive pulmonary disease. We explored for whom these interventions and aspects of care work best, why, and in what circumstances. Our main objective was to synthesise this evidence into specific guidance for healthcare professionals and decision-makers about how best to achieve equitable general practice. Design: Realist review. Main outcome measures: Clinical or care-related outcomes by socio-economic group, or other PROGRESS-Plus criteria. Review methods: Realist review based on Pawson's five steps: (1) locating existing theories, (2) searching for evidence, (3) selecting articles, (4) extracting and organising data and (5) synthesising the evidence. Results: Three hundred and twenty-five studies met the inclusion criteria and 159 of them were selected for the evidence synthesis. Evidence about the impact of general practice interventions on health inequalities is limited. To reduce health inequalities, general practice needs to be: • connected so that interventions are linked and coordinated across the sector; • intersectional to account for the fact that people's experience is affected by many of their characteristics; • flexible to meet patients' different needs and preferences; • inclusive so that it does not exclude people because of who they are; • community-centred so that people who receive care engage with its design and delivery. These qualities should inform action across four domains: structures like funding and workforce distribution, organisational culture, everyday regulated procedures involved in care delivery, interpersonal and community relationships. Limitations: The reviewed evidence offers limited detail about the ways and the extent to which specific interventions increase or decrease inequalities in general practice. Therefore, we focused on the underpinning principles that were common across interventions to produce higher-level, transferrable conclusions about ways to achieve equitable care. Conclusions: Inequalities in general practice result from complex processes across four different domains that include structures, ideas, regulated everyday procedures, and relationships among individuals and communities. To achieve equity, general practice needs to be connected, intersectional, flexible, inclusive and community-centred. Future work: Future work should focus on how these five essential qualities can be better used to shape the organisational development of future general practice. Study registration: This trial is registered as PROSPERO CRD42020217871. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR130694) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 7. See the NIHR Funding and Awards website for further award information.


Health inequalities are unfair differences in health across different groups of the population. In the United Kingdom, the health inequality gap in life expectancy between the richest and poorest is increasing and is caused mostly by differences in long-term conditions like cancer and cardiovascular disease and respiratory conditions, such as chronic obstructive pulmonary disease. Partly National Health Service inequalities arise in delays in seeing a doctor and care provided through doctors' surgery, such as delays in getting tests. This study explored how general practice services can increase or decrease inequalities in cancer, cardiovascular disease, diabetes and chronic obstructive pulmonary disease, under what circumstances and for whom. It also produced guidance for general practice, both local general practices and the wider general practice system, to reduce inequalities. We reviewed existing studies using a realist methodology. This methodology helps us understand the different contexts in which interventions work or not. We found that inequalities in general practice result from complex processes across different areas. These include funding and workforce, perceptions about health and disease among patients and healthcare staff, everyday procedures involved in care delivery, and relationships among individuals and communities. To reduce inequalities in general practice, action should be taken in all these areas and services need to be connected (i.e. linked and coordinated across the sector), intersectional (i.e. accounting for the fact that people's experience is affected by many of their characteristics like their gender and socio-economic position), flexible (i.e. meeting patients' different needs and preferences), inclusive (i.e. not excluding people because of who they are) and community-centred (i.e. working with the people who will receive care when designing and providing it). There is no one single intervention that will make general practice more equitable, rather it requires long-term organisational change based on these principles.


Assuntos
Medicina Geral , Pandemias , Humanos , Atenção à Saúde , Grupos Populacionais , Medicina de Família e Comunidade
3.
BMJ Open ; 14(2): e080024, 2024 Feb 17.
Artigo em Inglês | MEDLINE | ID: mdl-38367963

RESUMO

OBJECTIVES: Clinical communication needs of teenagers and young adults with cancer (TYACs) are increasingly recognised to differ significantly from younger children and older adults. We sought to understand who is present with TYACs, TYACs' experiences of triadic communication and its impact. We generated three research questions to focus this review: (1) Who is present with TYACs in healthcare consultations/communication?, (2) What are TYACs' experiences of communication with the supporter present? and (3) What is the impact of a TYAC's supporter being present in the communication? DESIGN: Systematic review with narrative synthesis. DATA SOURCES: The search was conducted across six databases: Medline, CINAHL, Embase, PsycINFO, Web of Science and AMED for all publications up to December 2023. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Included papers were empirical research published after 2005; participants had malignant disease, diagnosed aged 13-24 years (for over 50% of participants); the research addressed any area of clinical communication. DATA EXTRACTION AND SYNTHESIS: Three independent reviewers undertook full-text screening. A review-specific data extraction form was used to record participant characteristics and methods from each included paper and results relevant to the three review questions. RESULTS: A total of 8480 studies were identified in the search, of which 36 fulfilled the inclusion criteria. We found that mothers were the most common supporter present in clinical communication encounters. TYACs' experiences of triadic communication are paradoxical in nature-the supporter can help or hinder the involvement of the young person in care-related communication. Overall, young people are not included in clinical communication and decisions at their preferred level. CONCLUSION: Triadic communication in TYACs' care is common, complex and dynamic. Due to the degree of challenge and nuances raised, healthcare professionals need further training on effective triadic communication. PROSPERO REGISTRATION NUMBER: CRD42022374528.


Assuntos
Pessoal de Saúde , Neoplasias , Criança , Humanos , Adolescente , Adulto Jovem , Idoso , Pesquisa Qualitativa , Comunicação , Neoplasias/terapia , Neoplasias/diagnóstico
4.
F1000Res ; 12: 224, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37942019

RESUMO

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).


Assuntos
Avaliação de Resultados em Cuidados de Saúde , Cuidados Paliativos , Humanos , Adulto , Cuidados Paliativos/métodos , Revisões Sistemáticas como Assunto , Metanálise como Assunto , Literatura de Revisão como Assunto
5.
Lancet ; 402 Suppl 1: S13, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37997052

RESUMO

BACKGROUND: Dementia is a leading, global public health challenge. Recent evidence supporting a decrease in age-specific incidence of dementia in high-income countries (HICs) suggests that risk reduction is possible through improved life-course public health. Despite this, efforts to date have been heavily focused on individual-level approaches, which are unlikely to significantly reduce dementia prevalence or inequalities in dementia. In order to inform policy, we identified the population-level interventions for dementia risk reduction with the strongest evidence base. METHODS: We did this complex, multistage, evidence review to summarise the empirical, interventional evidence for population-level interventions to reduce or control each of the 12 modifiable life-course risk factors for dementia identified by the Lancet commission. We conducted a series of structured searches of peer-reviewed and grey literature databases (eg, Medline, Trip database, Cochrane library, Campbell Collaboration, the WHO, and Google Scholar), in January, March, and June, 2023. Search terms related to risk factors, prevention, and population-level interventions, without language restrictions. We extracted evidence of effectiveness and key contextual information to aid consideration and implementation of interventions by policymakers. We performed a narrative synthesis and evidence grading, and we derived a population-level dementia risk reduction intervention framework, structured by intervention type. This study is registered with PROSPERO, ID:CRD42023396193. FINDINGS: We identified clear and consistent evidence for the effectiveness of 26 population-level interventions to reduce the prevalence of nine of the risk factors, of which 23 have been empirically evaluated in HICs, and 16 in low-income and middle-income countries. We identified interventions that acted through fiscal levers (n=5; eg, removing primary school fees), marketing or advertising levers (n=5; eg, plain packaging of tobacco products), availability levers (n=8; eg, cleaner fuel replacement programmes for cooking stoves), and legislative levers (n=8; eg, mandated provision of hearing protective equipment at noisy workplaces). We were not able to recommend any interventions for diabetes (other than indirectly through action on obesity and physical inactivity), depression, or social isolation. INTERPRETATION: This complex evidence review provides policymakers and public health professionals with an evidence-based framework to help develop and implement population-level approaches for dementia risk reduction that could significantly reduce the population's risk of dementia and reduce health inequalities. FUNDING: None.


Assuntos
Demência , Pessoal de Saúde , Humanos , Demência/epidemiologia , Demência/prevenção & controle , Obesidade , Prevenção Primária , Fatores de Risco
6.
Eur Respir Rev ; 32(169)2023 Sep 30.
Artigo em Inglês | MEDLINE | ID: mdl-37495249

RESUMO

AIMS: To determine the lived experiences of people with COPD who isolated at home during the coronavirus disease 2019 (COVID-19) pandemic, and explore how these experiences affected health and patient-reported outcomes. METHODS: Keyword searches were performed in five bibliographic databases. Critical interpretative synthesis (CIS) methods were used to interrogate and understand patterns across studies. RESULTS: 23 studies were identified; three employed qualitative methods and 20 quantitative methods. Application of CIS methods highlighted a core synthetic concept that appeared to underpin experiences and outcomes, that of a heightened perception of risk. Using the Risk Perception Model as a framework, we found that cognitive factors such as knowledge of underlying health status and the transmissibility of COVID-19; experiential factors including previous episodes of breathlessness and hospitalisation; and sociocultural factors such as access to trusted sources of information, influenced perceptions of risk. In turn, this influenced behaviour, which translated to outcomes such as reduced hospitalisations, deconditioning and social isolation as people avoided "high-risk" situations and settings. CONCLUSIONS: Patients with COPD who isolated at home during the COVID-19 pandemic had a heightened perception of risk which was influenced by cognitive, experiential and sociocultural factors. The consequences of this were varied and included both positive (reduced exacerbations and hospitalisations) and negative (social isolation, deconditioning, diminished capacity for self-care) outcomes. Understanding risk and the impacts it can have could help clinicians to support people with COPD return to their pre-pandemic way of living and enable better communication of ongoing risk from respiratory viral illness.


Assuntos
COVID-19 , Doença Pulmonar Obstrutiva Crônica , Humanos , Pandemias , Cuidados Paliativos , Medidas de Resultados Relatados pelo Paciente , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Doença Pulmonar Obstrutiva Crônica/epidemiologia
7.
Otolaryngol Head Neck Surg ; 169(3): 467-481, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-36864717

RESUMO

OBJECTIVE: This study aims to estimate the rate of postoperative meningitis (both immediate and long-term) in patients following cochlear implants (CIs). It aims to do so through a systematic review and meta-analysis of published studies tracking complications after CIs. DATA SOURCES: MEDLINE, Embase, and Cochrane Library. REVIEW METHODS: This review was performed in line with Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Studies tracking complications following CIs in patients were included. Exclusion criteria included non-English language studies and case series reporting <10 patients. Bias risk was evaluated using the Newcastle-Ottawa Scale. Meta-analysis was performed through DerSimonian and Laird random-effects models. RESULTS: A total of 116/1931 studies met the inclusion criteria and were included in the meta-analysis. Overall, there were 112 cases of meningitis in 58,940 patients after CIs. Meta-analysis estimated an overall rate of postoperative meningitis of 0.07% (95% confidence interval [CIs], 0.03%-0.1%; I2 = 55%). Subgroup meta-analysis showed this rate had 95% CIs crossing 0% in implanted patients who received the pneumococcal vaccine, antibiotic prophylaxis, those with postoperative acute otitis media (AOM), and those implanted less than 5 years. CONCLUSION: Meningitis is a rare complication following CIs. Our estimated rates of meningitis after CIs appear lower than prior estimates based on epidemiological studies in the early 2000s. However, the rate still appears higher than the baseline rate in the general population. The risk was very low in implanted patients who received the pneumococcal vaccine, antibiotic prophylaxis, received unilateral or bilateral implantations, developed AOM, those implanted with a round window or cochleostomy techniques, and those under 5 years.


Assuntos
Implante Coclear , Implantes Cocleares , Meningite , Otite Média , Humanos , Implante Coclear/efeitos adversos , Implantes Cocleares/efeitos adversos , Meningite/epidemiologia , Meningite/etiologia , Vacinas Pneumocócicas
8.
Int J Surg Protoc ; 27(1): 84-89, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36875324

RESUMO

Background: Trauma accounts for 10% of global mortality, with increasing rates disproportionally affecting low- and middle-income countries. In an attempt to improve clinical outcomes after injury, trauma systems have been implemented in multiple countries over recent years. However, whilst many studies have subsequently demonstrated improvements in overall mortality outcomes, less is known about the impact trauma systems have on morbidity, quality of life, and economic burden. This systematic review seeks to assess the existing evidence base for trauma systems with these outcome measures. Methods: This review will include any study that assesses the impact implementation of a trauma system has on patient morbidity, quality of life, or economic burden. Any comparator study, including cohort, case-control, and randomised controlled studies, will be included, both retrospective or prospective in nature. Studies conducted from any region in the world and involving any age of patient will be included. We will collect data on any morbidity outcomes, health-related quality of life measures, or health economic assessments reported. We predict a high heterogeneity in these outcomes used and will therefore keep inclusion criteria broad. Discussion: Previous reviews have shown the significant improvements that can be achieved in mortality outcomes with the implementation of an organised trauma system, however the wider impact they can have on morbidity outcomes, quality of life measures, and the economic burden of trauma, is less well described. This systematic review will present all available data on these outcomes, helping to better characterise both the societal and economic impact of trauma system implementation. Highlights: Trauma systems are known to improve mortality rates, however less in known on the impact they have on morbidity outcomes, quality of life, and economic burdenWe aim to perform a systematic review to identify any comparator study that assesses the impact implementation of a trauma system on these outcomesUnderstanding the impact trauma systems can have on wider parameters, such as economic and quality of life outcomes, is crucial to allow governments globally to appropriately allocate often limited healthcare resources.PROSPERO registration number: CRD42022348529.

9.
BMJ Open ; 12(9): e063137, 2022 09 09.
Artigo em Inglês | MEDLINE | ID: mdl-36134765

RESUMO

OBJECTIVES: The purpose of this systematic review is to explore the effectiveness of the National Health Inequality Strategy, which was conducted in England between 1999 and 2010. DESIGN: Three databases (Ovid Medline, Embase and PsycINFO) and grey literature were searched for articles published that reported on changes in inequalities in health outcomes in England over the implementation period. Articles published between January 1999 and November 2021 were included. Title and abstracts were screened according to an eligibility criteria. Data were extracted from eligible studies, and risk of bias was assessed using the Risk of Bias in Non-randomized Studies of Interventions tool. RESULTS: The search strategy identified 10 311 unique studies, which were screened. 42 were reviewed in full text and 11 were included in the final review. Six studies contained data on inequalities of life expectancy or mortality, four on disease-specific mortality, three on infant mortality and three on morbidities. Early government reports suggested that inequalities in life expectancy and infant mortality had increased. However, later publications using more accurate data and more appropriate measures found that absolute and relative inequalities had decreased throughout the strategy period for both measures. Three of four studies found a narrowing of inequalities in all-cause mortality. Absolute inequalities in mortality due to cancer and cardiovascular disease decreased, but relative inequalities increased. There was a lack of change, or widening of inequalities in mental health, self-reported health, health-related quality of life and long-term conditions. CONCLUSIONS: With respect to its aims, the strategy was broadly successful. Policymakers should take courage that progress on health inequalities is achievable with long-term, multiagency, cross-government action. TRIAL REGISTRATION NUMBER: This study was registered in PROSPERO (CRD42021285770).


Assuntos
Disparidades nos Níveis de Saúde , Qualidade de Vida , Atenção à Saúde , Humanos , Saúde Mental , Autorrelato
10.
Maturitas ; 166: 104-116, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36150253

RESUMO

Dementia is a leading global cause of morbidity and mortality. Evidence suggests that tackling modifiable lifecourse risk factors could prevent or delay a significant proportion of cases. Population- and community-based approaches change societal conditions such that everyone across a given community is more likely to live more healthily. We systematically reviewed economic studies of population- and community-based interventions to reduce modifiable lifecourse risk factors for dementia. We searched Medline, EMBASE, Web of Science, CINAHL, PsycInfo, Scopus, Econlit, ERIC, the British Education Index, and Google, on 03/03/2022. We included cost-effectiveness, cost-benefit, and cost-utility studies, provided that the direct outcome of the intervention was a modifiable risk factor for dementia, and was measured empirically. Quality appraisal was completed using the Consensus on Health Economic Criteria checklist. A narrative synthesis was performed. We included 45 studies, from 22,749 records identified. Included studies targeted smoking (n = 15), education (n = 10), physical inactivity (n = 9), obesity (n = 5), air pollution (n = 2), traumatic brain injury (n = 1), and multiple risk factors (n = 3). Intervention designs included changing the physical/food environment (n = 13), mass media programmes (n = 11), reducing financial barriers or increasing resources (n = 10), whole-community approaches (n = 6), and legislative change (n = 3). Overall, interventions were highly cost-effective and/or cost-saving, particularly those targeting smoking, educational attainment, and physical inactivity. Effects were observed in high- (e.g. USA and UK) and low- and middle-income (e.g. Mexico, Tanzania, Thailand) countries. Further research into the direct effects of targeting these risk factors on future dementia prevalence will have important economic, social and policy implications.


Assuntos
Demência , Obesidade , Humanos , Análise Custo-Benefício , Fatores de Risco , Promoção da Saúde , Demência/prevenção & controle
11.
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
12.
BMJ Support Palliat Care ; 12(2): 142-151, 2022 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33608254

RESUMO

BACKGROUND: Inequalities in access to hospice care is a source of considerable concern; white, middle-class, middle-aged patients with cancer have traditionally been over-represented in hospice populations. OBJECTIVE: To identify from the literature the demographic characteristics of those who access hospice care more often, focusing on: diagnosis, age, gender, marital status, ethnicity, geography and socioeconomic status. DESIGN: Systematic literature review and narrative synthesis. METHOD: Searches of Medline, PsycINFO, CINAHL, Web of Science, Assia and Embase databases from January 1987 to end September 2019 were conducted. Inclusion criteria were peer-reviewed studies of adult patients in the UK, Australia, New Zealand and Canada, receiving inpatient, day, outpatient and community hospice care. Of the 45 937 titles retrieved, 130 met the inclusion criteria. Narrative synthesis of extracted data was conducted. RESULTS: An extensive literature search demonstrates persistent inequalities in hospice care provision: patients without cancer, the oldest old, ethnic minorities and those living in rural or deprived areas are under-represented in hospice populations. The effect of gender and marital status is inconsistent. There is a limited literature concerning hospice service access for the LGBTQ+ community, homeless people and those living with HIV/AIDS, diabetes and cystic fibrosis. CONCLUSION: Barriers of prognostic uncertainty, institutional cultures, particular needs of certain groups and lack of public awareness of hospice services remain substantial challenges to the hospice movement in ensuring equitable access for all.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Neoplasias , Adulto , Idoso de 80 Anos ou mais , Austrália , Etnicidade , Humanos , Pessoa de Meia-Idade
13.
Int J Law Psychiatry ; 78: 101733, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34481216

RESUMO

BACKGROUND: Prader-Willi Syndrome (PWS) is a complex multisystem genetic disorder associated with several challenges for people with PWS themselves, and for their families and care givers. Support around access to food is a particular issue due to impaired satiety and, because of this, people with PWS eat excessive amounts of food (hyperphagia). Together with other aspects of the PWS phenotype including, in many cases, a reduced sensitivity to pain, hyperphagia results in life-threatening obesity and life-shortening complications for some people with PWS. Restrictions to liberty and/or access to food raise important legal and ethical considerations in the clinical management of children and adults with PWS. Particularly where disagreements arise and, in the absence of comprehensive guidance for care providers, the courts may be called upon to resolve these difficult issues. AIMS: 1) To review case-law from English-speaking common law jurisdictions concerning support arrangements for people with PWS with a view to identifying issues that have required the intervention of the courts. 2) To identify principles on which to base clinical guidelines relating to the issues identified, ensuring that such guidelines are consistent with ethical and human rights imperatives. METHODS: Westlaw, Westlaw AU, and Lexis Nexis were searched for case law concerning the treatment or support of a person with PWS. RESULTS: Fifteen cases from jurisdictions in Australia, New Zealand, Canada, the United Kingdom and the United States of America met inclusion criteria. Areas requiring judicial decision making included a) detention in psychiatric hospital; b) support in least restrictive environments c) eligibility for support services; d) guardianship; e) access to special education. Judicial decisions are discussed in the context of the United Nations' Convention on the Rights of Persons with Disabilities.


Assuntos
Síndrome de Prader-Willi , Austrália , Humanos , Hiperfagia , Nova Zelândia , Síndrome de Prader-Willi/terapia , Reino Unido
14.
BMJ Open ; 11(6): e052746, 2021 06 15.
Artigo em Inglês | MEDLINE | ID: mdl-34130967

RESUMO

INTRODUCTION: Healthcare organisations recognise the moral imperative to address inequalities in health outcomes but often lack an understanding of which types of interventions are likely to reduce them. This realist review will examine the existing evidence on the types of interventions or aspects of routine care in general practice that are likely to decrease or increase health inequalities (ie, inequality-generating interventions) across cardiovascular disease, cancer, diabetes and chronic obstructive pulmonary disease. METHODS AND ANALYSIS: Our realist review will follow Pawson's five iterative stages. We will start by developing an initial programme theory based on existing theories and discussions with stakeholders. To navigate the large volume of literature, we will access the primary studies through the identification of published systematic reviews of interventions delivered in general practice across the four key conditions. We will examine the primary studies included within each systematic review to identify those reporting on inequalities across PROGRESS-Plus categories. We will collect data on a range of clinical outcomes including prevention, diagnosis, follow-up and treatment. The data will be synthesised using a realist logic of analysis. The findings will be a description and explanation of the general practice interventions which are likely to increase or decrease inequalities across the major conditions. ETHICS AND DISSEMINATION: Ethics approval is not required because this study does not include any primary research. The findings will be integrated into a series of guiding principles and a toolkit for healthcare organisations to reduce health inequalities. Findings will be disseminated through peer-reviewed publications, conference presentations and user-friendly summaries. PROSPERO REGISTRATION NUMBER: CRD42020217871.


Assuntos
Medicina Geral , Disparidades nos Níveis de Saúde , Atenção à Saúde , Projetos de Pesquisa , Literatura de Revisão como Assunto
15.
BMJ Open ; 11(4): e046331, 2021 04 15.
Artigo em Inglês | MEDLINE | ID: mdl-33858873

RESUMO

INTRODUCTION: Screening programmes represent a considerable amount of healthcare activity. As complex interventions, they require careful delivery to generate net benefit. Much screening work occurs in primary care. Despite intensive study of intervention delivery in primary care, there is currently no synthesis of the delivery of screening programmes in this setting. The purpose of this review is to describe and critically evaluate the delivery of screening programmes in general practice and community services. METHODS AND ANALYSIS: We will use scoping review methods to explore which components of screening programmes are delivered in primary care and systematic review methods to locate and synthesise evidence on how screening programmes can be delivered in primary care, including barriers, facilitators and strategies. We will include empirical studies of any design which consider screening programmes in high-income countries, based in part or whole in primary care. We will search 20 information sources from 1 January 2000, including those relating to health (eg, MEDLINE, Embase, CINAHL), management (eg, Rx for change database) and grey literature (eg, OpenGrey, screening committee websites). Two reviewers will screen citations and full texts of potentially eligible studies and assess these against inclusion criteria. Qualitative and quantitative data will be extracted in duplicate and synthesised using a best fit framework approach. Within the systematic review, the mixed methods appraisal tool will be used to assess risk of bias. ETHICS AND DISSEMINATION: No ethics approval is required. We will disseminate findings to academics through publication and presentation, to decision-makers through national screening bodies, to practitioners through professional bodies, and to the public through social media. PROSPERO REGISTRATION NUMBER: CRD42020215420.


Assuntos
Atenção à Saúde , Atenção Primária à Saúde , Humanos , Programas de Rastreamento , Projetos de Pesquisa , Seguridade Social , Revisões Sistemáticas como Assunto
16.
Clin Otolaryngol ; 46(3): 485-493, 2021 May.
Artigo em Inglês | MEDLINE | ID: mdl-33453137

RESUMO

INTRODUCTION: Nasal packing is the mainstay of epistaxis management; however, packs cause patient discomfort and can lead to hospital admission. Absorbable haemostats provide clotting factors or act as a substrate to stimulate clotting and represent a potential treatment alternative. A systematic review was performed to evaluate the efficacy of topical haemostats in the management of epistaxis. METHODS: A systematic literature search of 7 databases was performed. Only eligible randomised controlled trials (RCTs) and observational studies were included. The primary outcome was short-term haemostatic success (<7 days). Secondary outcomes included long-term haemostatic control (no rebleeding 7-30 days), patient discomfort and adverse effects. Meta-analysis was performed where possible. RESULTS: Of 2249 records identified, 12 were included in the qualitative synthesis and 4 RCTs were included in meta-analysis. The following haemostats were reported: gelatin-thrombin matrix (n = 8), aerosolised/gel tranexamic acid (n = 1), cellulose agents (n = 2) and fibrin sealants (n = 1). Studies involving tranexamic acid on removable delivery devices (eg, pledgets) were excluded. There was heterogeneity in outcome measures and inclusion criteria (coagulopathies/anticoagulants were excluded in 3 RCTs and 2 observational studies). The short-term haemostatic success varied between studies (13.9% to 100%). No significant post-procedural complications were reported. The meta-analysis favoured absorbable haemostatic agent versus packing (risk ratio 1.20; 95% confidence interval 1.05 to 1.37; P = .007). The risk of bias across all studies was moderate to high. CONCLUSIONS: The evidence suggests haemostatic agents are effective at managing acute epistaxis when compared with nasal packing. More data are required before recommendations can be made regarding management in patients on anticoagulants.


Assuntos
Epistaxe/tratamento farmacológico , Hemostáticos/administração & dosagem , Administração Intranasal , Administração Tópica , Humanos
17.
BMJ Support Palliat Care ; 11(1): 68-74, 2021 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-33046445

RESUMO

BACKGROUND: Clinically assisted hydration (CAH) can be provided in the last days of life as drinking declines. The impact of this practice on quality of life or survival in the last days of life is unclear. Practice varies worldwide concerning this emotive issue. METHOD: Systematic literature review and narrative synthesis of studies evaluating the impact of, or attitudes toward, CAH in the last days of life. Databases were searched up to December 2019. Studies were included if the majority of participants were in the last 7 days of life, and were evaluated using Gough's 'Weight of Evidence' framework. Review protocol registered with PROSPERO, registration number CRD42019125837. RESULTS: Fifteen studies were included in the synthesis. None were judged to be both of high quality and relevance. No evidence was found that the provision of CAH has an impact on symptoms or survival. Patient and family carer attitudes toward assisted hydration were diverse. CONCLUSION: There is currently insufficient evidence to draw firm conclusions on the impact of CAH in the last days of life. Future research needs to focus on patients specifically in the last days of life, include those with non-malignant diagnoses, and evaluate best ways to communicate effectively about this complex topic with patients and their families.


Assuntos
Planejamento Antecipado de Cuidados , Tomada de Decisão Clínica , Hidratação/psicologia , Qualidade de Vida , Assistência Terminal/psicologia , Comunicação , Hidratação/métodos , Humanos , Preferência do Paciente/psicologia , Relações Profissional-Família , Assistência Terminal/métodos
18.
Curr Opin Support Palliat Care ; 14(3): 197-205, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32701858

RESUMO

PURPOSE OF REVIEW: This review seeks to identify the current prevalence of potentially life-limiting respiratory conditions among those who have experienced homelessness, incarceration or had criminal justice involvement, and current developments in, and barriers to, delivery of supportive and palliative respiratory care to these populations. These structurally vulnerable populations are known to be growing, their health behaviours more risky, and their morbidity and mortality higher, with evidence of accelerated ageing. RECENT FINDINGS: Most studies identified investigated prevalence of respiratory conditions, which were found to be high. In contrast, only one study directly explored supportive and palliative care (in a prison population) and none considered or addressed palliative and end-of-life needs of these populations, or mechanisms to address them. There was an absence of qualitative work and studies of the impact on, or role of, family, friends or informal networks. SUMMARY: There is a need for evidence-based interventions to reduce the risk of communicable respiratory conditions and a greater understanding of disease trajectories and management for these vulnerable populations, including provision of accessible appropriate supportive, palliative and end-of-life care.


Assuntos
Pessoas Mal Alojadas , Cuidados Paliativos/organização & administração , Prisioneiros , Transtornos Respiratórios/epidemiologia , Asma/epidemiologia , Direito Penal , Comportamentos Relacionados com a Saúde , Acessibilidade aos Serviços de Saúde/organização & administração , Humanos , Doença Pulmonar Obstrutiva Crônica/epidemiologia , Infecções Respiratórias/epidemiologia , Fumar/epidemiologia , Assistência Terminal/organização & administração , Tuberculose Pulmonar/epidemiologia
20.
BMC Med Res Methodol ; 18(1): 66, 2018 06 28.
Artigo em Inglês | MEDLINE | ID: mdl-29954322

RESUMO

BACKGROUND: Network meta-analysis (NMA) allows for the estimation of comparative effectiveness of treatments that have not been studied in head-to-head trials; however, relative treatment effects for all interventions can only be derived where available evidence forms a connected network. Head-to-head evidence is limited in many disease areas, regularly resulting in disconnected evidence structures where a large number of treatments are available. This is also the case in the evidence of treatments for relapsed or refractory multiple myeloma. METHODS: Randomised controlled trials (RCTs) identified in a systematic literature review form two disconnected evidence networks. Standard Bayesian NMA models are fitted to obtain estimates of relative effects within each network. Observational evidence was identified to fill the evidence gap. Single armed trials are matched to act as each other's control group based on a distance metric derived from covariate information. Uncertainty resulting from including this evidence is incorporated by analysing the space of possible matches. RESULTS: Twenty five randomised controlled trials form two disconnected evidence networks; 12 single armed observational studies are considered for bridging between the networks. Five matches are selected to bridge between the networks. While significant variation in the ranking is observed, daratumumab in combination with dexamethasone and either lenalidomide or bortezomib, as well as triple therapy of carfilzomib, ixazomib and elozumatab, in combination with lenalidomide and dexamethasone, show the highest effects on progression free survival, on average. CONCLUSIONS: The analysis shows how observational data can be used to fill gaps in the existing networks of RCT evidence; allowing for the indirect comparison of a large number of treatments, which could not be compared otherwise. Additional uncertainty is accounted for by scenario analyses reducing the risk of over confidence in interpretation of results.


Assuntos
Protocolos de Quimioterapia Combinada Antineoplásica/uso terapêutico , Mieloma Múltiplo/tratamento farmacológico , Metanálise em Rede , Estudos Observacionais como Assunto , Anticorpos Monoclonais/administração & dosagem , Teorema de Bayes , Bortezomib/administração & dosagem , Dexametasona/administração & dosagem , Humanos , Lenalidomida/efeitos adversos , Mieloma Múltiplo/patologia , Oligopeptídeos/administração & dosagem , Ensaios Clínicos Controlados Aleatórios como Assunto , Análise de Sobrevida , Revisões Sistemáticas como Assunto
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