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Expected wait times for access to a disease-modifying Alzheimer's treatment in England: A modelling study. 英国阿尔茨海默病改良治疗的预期等待时间:一项模型研究。
IF 2.7 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-04-01 Epub Date: 2023-11-06 DOI: 10.1177/13558196231211141
Soeren Mattke, Yu Tang, Mark Hanson

Objectives: We previously analysed the preparedness to deliver a disease-modifying Alzheimer's treatment in the United Kingdom and predicted substantial wait times. This study updates the prediction for the National Health Service (NHS) in England, using an improved model and newer data.

Methods: We reviewed published data on capacity for diagnosis of cognitive impairment combined with expert input and constructed a model for wait times to access from 2023 to 2043. The model tracks patients from initial evaluation in primary care, cognitive testing by a dementia specialist, confirmatory biomarker testing with positron emission tomography (PET) scans or examination of cerebrospinal fluid and infusion delivery. Capacity for specialist visits and PET scans are assumed to be capacity constrained, and cerebrospinal fluid testing and infusion delivery to be scalable.

Results: Capacity constraints were projected to result in substantial wait times: patients referred to specialists based on a brief cognitive test, which is the current standard of care, would expect an overall initial wait times of 56 months in 2023, increasing to 129 months in 2029 and then falling slowly to around 100 months. Use of a blood test for the confirmation of Alzheimer's pathology as an additional triage step, would reduce wait times to around 17 to 25 months.

Discussion: The NHS England lacks capacity to provide timely access to a disease-modifying treatment, which is estimated to result in significant wait times and potentially avoidable disease progression. Better diagnostic tools at initial evaluation may reduce delays.

目的:我们之前分析了英国提供阿尔茨海默病治疗的准备情况,并预测了大量的等待时间。这项研究使用改进的模型和更新的数据更新了英国国家医疗服务体系(NHS)的预测。方法:我们回顾了已发表的关于认知障碍诊断能力的数据,并结合专家的意见,构建了2023年至2043年的等待时间模型。该模型从初级保健的初步评估、痴呆症专家的认知测试、正电子发射断层扫描(PET)的验证性生物标志物测试或脑脊液和输液检查中跟踪患者。专家就诊和PET扫描的能力被认为是受能力限制的,脑脊液检测和输注是可扩展的。结果:预计容量限制将导致大量等待时间:根据目前的护理标准,根据简短的认知测试转诊给专家的患者,预计2023年的总体初始等待时间为56个月,2029年增加到129个月,然后缓慢下降到100个月左右。使用血液测试来确认阿尔茨海默病的病理学,作为一个额外的分诊步骤,将把等待时间减少到大约17到25个月。讨论:英国国家医疗服务体系缺乏及时获得疾病改良治疗的能力,据估计,这会导致相当长的等待时间和潜在的可避免的疾病进展。在初始评估时使用更好的诊断工具可以减少延迟。
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引用次数: 0
Tackling disrespect in health care: The relevance of socio-relational equality. 解决医疗保健中的不尊重问题:社会关系平等的相关性。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-01-01 Epub Date: 2023-07-27 DOI: 10.1177/13558196231187961
Vikki A Entwistle, Alan Cribb, Polly Mitchell

Disrespect in health care often persists despite firm commitments to respectful service provision. This conceptual paper highlights how the ways in which respect and disrespect are characterised can have practical implications for how well disrespect can be tackled. We stress the need to focus explicitly on disrespect (not only respect) and propose that disrespect can usefully be understood as a failure to relate to people as equals. This characterisation is consonant with some accounts of respect but sometimes obscured by a focus on respecting people's autonomy and dignity. Emphasising equality is consistent with connections patients draw between being (dis)respected and (in)equality. It readily accommodates microaggressions as forms of disrespect, helping to understand how and why experiences of disrespect may be unintentional and to explain why even small instances of disrespect are wrong. Our view of disrespect with an emphasis on equality strengthens the demand that health systems take disrespect seriously as a problem of social injustice and tackle it at institutional, not just individual levels. It suggests several strategies for practical action. Emphasising relational equality is not an easy or short-term fix for disrespect, but it signals a direction of travel towards an important improvement ambition.

尽管我们坚定地承诺要提供尊重他人的服务,但医疗服务中的不尊重现象往往依然存在。这篇概念性论文强调了尊重与不尊重的表征方式如何对如何有效解决不尊重问题产生实际影响。我们强调有必要明确关注不尊重(而不仅仅是尊重),并建议将不尊重有效地理解为未能平等地与人交往。这一特征与某些关于尊重的论述相一致,但有时会被对尊重人们的自主权和尊严的关注所掩盖。强调平等与患者将(不)受尊重与(不)平等联系起来是一致的。它很容易将微小的冒犯行为视为不尊重的形式,有助于理解不尊重的经历如何以及为什么可能是无意的,并解释为什么即使是很小的不尊重事件也是错误的。我们强调平等的不尊重观点进一步要求卫生系统认真对待不尊重这一社会不公正问题,并从制度层面而不仅仅是个人层面加以解决。它提出了几项实际行动策略。强调关系平等并不是解决不尊重问题的简单或短期办法,但它预示着一个重要的改进方向。
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引用次数: 0
Fostering equitable change in health services: Using critical reflexivity to challenge dominant discourses in low back pain care in Australia. 促进医疗服务的公平变革:使用批判性反身性挑战澳大利亚腰背痛护理中的主流话语。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-01-01 Epub Date: 2023-08-08 DOI: 10.1177/13558196231193862
Karime Mescouto, Rebecca E Olson, Nathalia Costa, Kerrie Evans, Miriam Dillon, Kelly Walsh, Niamh Jensen, Paul W Hodges, Kathryn Lonergan, Megan Weier, Jenny Setchell

Objectives: Justice and equity-focused practices in health services play a critical but overlooked role in low back pain (LBP) care. Critical reflexivity - the ability to examine and challenge power relations, and broader social issues embedded in everyday life - can be a useful tool to foster practices that are more socially just. No research has yet explored this approach in back pain health services. This study sought to understand how clinicians construct LBP in relation to broader socio-cultural-political aspects of care and explore if those constructions changed when clinicians engaged with critically reflexive dialogues with researchers.

Methods: Using critical discourse analysis methods, this qualitative study explored institutionalised patterns of knowledge in the construction of LBP care. We conducted 22 critically reflexive dialogues with 29 clinicians from two health services in Australia - a private physiotherapy clinic and a public multidisciplinary pain clinic.

Results: Our analyses suggested that clinicians and services often constructed LBP care at an individual level. This dominant individualistic discourse constrained consideration of justice-oriented practices in the care of people with LBP. Through dialogues, discursive constructions of LBP care expanded to incorporate systems and health service workplace practices. This expansion fostered more equitable clinical and service practices - such as assisting patients to navigate health care systems, considering patients' socioeconomic circumstances when developing treatment plans, encouraging staff discussion of possible systemic changes to enhance justice, and fostering a more inclusive workplace culture. Although such expansions faced challenges, incorporating broader discourses enabled recommendations to address LBP care inequities.

Conclusions: Critical reflexivity can be a tool to foster greater social justice within health services. By expanding constructions of LBP care beyond individuals, critical reflexive dialogues can foster discussion and actions towards more equitable workplace cultures, services and systems.

目标:在腰背痛(LBP)治疗中,医疗服务中以公正和公平为重点的实践发挥着至关重要但却被忽视的作用。批判性反思--审视和挑战权力关系以及日常生活中更广泛的社会问题的能力--可以成为促进更具社会公正性的实践的有用工具。目前还没有研究探讨过背痛医疗服务中的这种方法。本研究旨在了解临床医生如何将枸橼酸背痛症与护理中更广泛的社会文化政治方面联系起来进行构建,并探讨当临床医生与研究人员进行批判性反思对话时,这些构建是否会发生变化:这项定性研究采用批判性话语分析方法,探讨了枸杞多糖症护理构建中的制度化知识模式。我们与来自澳大利亚两家医疗服务机构(一家私人物理治疗诊所和一家公立多学科疼痛诊所)的 29 名临床医生进行了 22 次批判性反思对话:结果:我们的分析表明,临床医生和医疗服务机构通常从个人层面构建枸杞多糖症护理。这种占主导地位的个人主义话语限制了在为腰椎间盘突出症患者提供护理时考虑以公正为导向的做法。通过对话,枸杞多糖症护理的话语构建扩展到了系统和医疗服务工作场所的实践。这种扩展促进了更公平的临床和服务实践--例如,帮助患者了解医疗保健系统,在制定治疗计划时考虑患者的社会经济状况,鼓励员工讨论可能的系统变革以提高公正性,以及培养更具包容性的工作场所文化。尽管这种扩展面临挑战,但纳入更广泛的论述有助于提出解决枸杞多糖症护理不平等问题的建议:结论:批判性反思可以作为一种工具,在医疗服务中促进更大的社会公正。通过将枸杞多糖症护理的构建扩展到个人之外,批判性反思对话可以促进讨论和行动,从而实现更公平的工作场所文化、服务和系统。
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引用次数: 0
Think tanks and health policy in the United Kingdom: The role of the King's Fund. 英国的智囊团和卫生政策:国王基金的作用。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-01-01 Epub Date: 2023-10-25 DOI: 10.1177/13558196231207808
Chris Ham

The King's Fund is a long-established health policy think tank involved in work on evidence-based policy in the United Kingdom. There have been few accounts of how think tanks operate. This essay seeks to partially fill that gap by reviewing the work of the Fund between 2010 and 2018, when the author was its chief executive. The essay outlines the history and status of the Fund, its funding and staffing, and the range of activities undertaken. Examples of policy areas in which the Fund was active and its impact on both policymakers in central government and leaders working in the National Health Service are discussed.

国王基金会是一个历史悠久的卫生政策智囊团,参与联合王国循证政策的工作。关于智库如何运作的报道很少。本文试图通过回顾该基金在2010年至2018年期间的工作来部分填补这一空白,当时作者是该基金的首席执行官。文章概述了该基金的历史和地位、资金和人员配置以及开展的活动范围。讨论了该基金活跃的政策领域的例子及其对中央政府决策者和国家卫生服务部门领导人的影响。
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引用次数: 0
Integration and impact of pharmacists in general practice internationally: A rapid review. 药剂师在国际全科实践中的融入和影响:快速回顾。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-01-01 Epub Date: 2023-06-17 DOI: 10.1177/13558196231179831
Georgios Dimitrios Karampatakis, Nilesh Patel, Graham Stretch, Kath Ryan

Objective: English general practices have been facing ongoing pressures, arising from complicated health care needs and the recent pandemic. To overcome these pressures and reduce the workload of general practitioners, there have been extensive attempts to integrate pharmacists into general practices. A number of literature reviews, often systematic, have partially explored the topic of general practice-based pharmacists (GPBPs) internationally. Our aim was to further explore the employment/integration models of GPBPs and their actual activities and impact, concepts that have not been thoroughly investigated by previous reviews.

Methods: Two databases were searched from inception to June 2021 for studies published in the English language. Results were independently screened by two reviewers to establish eligibility for inclusion. Original research studies, or protocols where results had not been released at the time of search, that reported on services provided by pharmacists with some sort of integration into general practices were included. The studies were analysed using narrative synthesis.

Results: Searches identified 3206 studies in total, of which 75 met the inclusion criteria. The included studies were highly heterogeneous in terms of participants involved and methodologies employed. Integration of pharmacists into general practices has occurred in several countries, with funds originating from multiple sources. Several employment models for GPBPs were described - for example, part-time and full-time work and/or coverage of multiple or single practices. GPBP activities, with some exceptions, were comparable between different countries, with medication reviews being the most common task globally. GPBP impact was identified through both observational and/or interventional research methods, by pursuing a large variety of measures (e.g. activity volume, contact with patients, perceptions/experiences, and patient outcomes). Independent, quantifiable outcomes from GPBP activities were all positive but were of varying statistical significance.

Conclusions: Our findings suggest that GPBP services can lead to positive, quantifiable outcomes, mainly in relation to medication use. This shows the usefulness of GPBP services. The findings of this review can help policy makers decide how best to implement and fund GPBP services, and how to identify and measure GPBP impact.

目的:英国的全科医生一直面临着复杂的医疗保健需求和近期大流行病所带来的压力。为了克服这些压力并减轻全科医生的工作量,人们广泛尝试将药剂师纳入全科诊所。一些文献综述(通常是系统性的)对国际上以全科诊所为基础的药剂师(GPBPs)这一主题进行了部分探讨。我们的目的是进一步探讨 GPBPs 的聘用/整合模式及其实际活动和影响,这些概念在以往的综述中尚未得到深入研究:方法:我们在两个数据库中搜索了从开始到 2021 年 6 月以英语发表的研究。研究结果由两名审稿人独立筛选,以确定是否符合纳入条件。纳入的研究均为原创性研究,或在检索时尚未发布结果的协议,这些协议报告了药剂师提供的服务,并在某种程度上融入了普通实践。研究结果采用叙事综合法进行分析:搜索共发现 3206 项研究,其中 75 项符合纳入标准。所纳入的研究在参与者和所采用的方法方面存在很大差异。多个国家已将药剂师纳入到全科实践中,资金来自多个来源。研究介绍了 GPBP 的几种就业模式,例如兼职和全职工作,以及/或覆盖多个或单个诊所。除个别情况外,GPBP 的活动在不同国家之间具有可比性,而药物审查是全球最常见的任务。GPBP 的影响是通过观察和/或干预性研究方法,采用多种衡量标准(如活动量、与患者的接触、感知/体验和患者疗效)来确定的。GPBP 活动产生的独立、可量化的结果都是积极的,但统计意义各不相同:我们的研究结果表明,GPBP 服务可以带来积极的、可量化的结果,主要与药物使用有关。这表明 GPBP 服务是有用的。本综述的结果有助于政策制定者决定如何最好地实施和资助 GPBP 服务,以及如何确定和衡量 GPBP 的影响。
{"title":"Integration and impact of pharmacists in general practice internationally: A rapid review.","authors":"Georgios Dimitrios Karampatakis, Nilesh Patel, Graham Stretch, Kath Ryan","doi":"10.1177/13558196231179831","DOIUrl":"10.1177/13558196231179831","url":null,"abstract":"<p><strong>Objective: </strong>English general practices have been facing ongoing pressures, arising from complicated health care needs and the recent pandemic. To overcome these pressures and reduce the workload of general practitioners, there have been extensive attempts to integrate pharmacists into general practices. A number of literature reviews, often systematic, have partially explored the topic of general practice-based pharmacists (GPBPs) internationally. Our aim was to further explore the employment/integration models of GPBPs and their actual activities and impact, concepts that have not been thoroughly investigated by previous reviews.</p><p><strong>Methods: </strong>Two databases were searched from inception to June 2021 for studies published in the English language. Results were independently screened by two reviewers to establish eligibility for inclusion. Original research studies, or protocols where results had not been released at the time of search, that reported on services provided by pharmacists with some sort of integration into general practices were included. The studies were analysed using narrative synthesis.</p><p><strong>Results: </strong>Searches identified 3206 studies in total, of which 75 met the inclusion criteria. The included studies were highly heterogeneous in terms of participants involved and methodologies employed. Integration of pharmacists into general practices has occurred in several countries, with funds originating from multiple sources. Several employment models for GPBPs were described - for example, part-time and full-time work and/or coverage of multiple or single practices. GPBP activities, with some exceptions, were comparable between different countries, with medication reviews being the most common task globally. GPBP impact was identified through both observational and/or interventional research methods, by pursuing a large variety of measures (e.g. activity volume, contact with patients, perceptions/experiences, and patient outcomes). Independent, quantifiable outcomes from GPBP activities were all positive but were of varying statistical significance.</p><p><strong>Conclusions: </strong>Our findings suggest that GPBP services can lead to positive, quantifiable outcomes, mainly in relation to medication use. This shows the usefulness of GPBP services. The findings of this review can help policy makers decide how best to implement and fund GPBP services, and how to identify and measure GPBP impact.</p>","PeriodicalId":15953,"journal":{"name":"Journal of Health Services Research & Policy","volume":" ","pages":"56-67"},"PeriodicalIF":1.9,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10729538/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9698154","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Disrespect in health care: An epistemic injustice. 医疗保健中的不尊重:认知上的不公正。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-01-01 Epub Date: 2023-11-18 DOI: 10.1177/13558196231212851
Mary Catherine Beach
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引用次数: 0
Measuring the value of solidarity: The abem financial assistance program for out-of-pocket payments on pharmacy medicines in Portugal. 衡量团结的价值:葡萄牙自付药费的 abem 财政援助计划。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-01-01 Epub Date: 2023-08-18 DOI: 10.1177/13558196231196384
Miguel Gouveia, Margarida Borges, João Costa, Francisco Lourenço, Francesca Fiorentino, António Teixeira Rodrigues, Inês Teixeira, José Pedro Guerreiro, Patrícia Caetano, António Vaz Carneiro

Objective: Out-of-pocket payments for prescribed medicines are still comparatively high in Portugal. The abem program was launched in Portugal in May 2016 to aid vulnerable groups by completely covering out-of-pocket costs of prescribed medicines in community pharmacies. This study assesses the impact of the program on poverty and catastrophic health expenditures.

Methods: A longitudinal study was carried out with the analysis of several program databases (from the beginning of the program in May 2016 to September 2018) covering the cohorts of beneficiaries, daily data on medicines dispensed, social referencing entities, and solidarity pharmacies. The study provides estimates of standard poverty measures (intensity and severity) as well as the incidence of catastrophic health expenditures.

Results: More than 6000 beneficiaries were supported (56.8% female, 34.7% aged 65 or over), encompassing 127,510 medicines (mainly nervous system and cardiovascular system) with an average 26.9% co-payment (payments totalling €1.5 million). The program achieved substantial reductions in poverty (3.4% in intensity, 5.6% in severity), and eliminated cases with catastrophic health expenditures in medicines that would have affected 7.5% of the beneficiaries.

Conclusions: Findings confirm a continuous increase in the number of beneficiaries, enabling access to medicines especially for the vulnerable elderly, and a sizable impact on eliminating out-of-pocket payments for medicines in the target population.

目的:在葡萄牙,处方药的自付费用仍然相对较高。葡萄牙于 2016 年 5 月启动了 abem 计划,通过完全支付社区药房处方药的自付费用来帮助弱势群体。本研究评估了该计划对贫困和灾难性医疗支出的影响:通过分析多个计划数据库(从 2016 年 5 月计划开始至 2018 年 9 月),开展了一项纵向研究,涵盖了受益人队列、每日配药数据、社会参照实体和团结药房。研究提供了标准贫困衡量标准(强度和严重程度)以及灾难性医疗支出发生率的估计值:6000 多名受益人(56.8% 为女性,34.7% 为 65 岁或以上)获得了支助,涉及 127 510 种药品(主要是神经系统和心血管系统),平均自付比例为 26.9%(付款总额为 150 万欧元)。该计划大幅减少了贫困现象(强度减少了 3.4%,严重程度减少了 5.6%),并消除了会影响 7.5%受益人的药品灾难性医疗支出:研究结果证实,受益者人数持续增加,特别是弱势老年人能够获得药品,并对消除目标人群的自付药品费用产生了重大影响。
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引用次数: 0
Patient and multidisciplinary health professional perceptions of an Australian geriatric evaluation and management and rehabilitation hospital in the home service. 患者和多学科健康专业人士对澳大利亚老年病评估、管理和康复医院家庭服务的看法。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-01-01 Epub Date: 2023-10-28 DOI: 10.1177/13558196231193863
Ruth Cox, Greg Kyle, Anya Suzuki, Laurelie Wishart, Melissa McCusker, Alexander McConnell, Elizabeth C Ward, Leo Ross, Clare Webb

Objectives: Hospital in the Home models are rapidly expanding in response to increasing bed pressures. This study examined patient and multidisciplinary health professional perceptions of a new geriatric evaluation and management and rehabilitation hospital in the home service in Australia. The service was unique, as adults of all ages with a variety of rehabilitation or geriatric evaluation and management needs were within scope.

Methods: A qualitative descriptive approach was used with a consumer co-researcher and a consumer advisor being integral to decision-making. Patient feedback was collected via a paper-based patient satisfaction survey between August 2020 and February 2022. Additionally, interviews with current and past staff were conducted from July to November 2021. Reflexive thematic analysis was conducted for qualitative data and descriptive statistics used for quantitative data.

Results: Patient surveys were analysed (n = 199, 42.2% response rate) with 60.8% of participants aged 75 years or over and 26.6% speaking a language other than English. High satisfaction was expressed. Feelings of comfort, familiarity, convenience, and reassurance were voiced. A person-centred approach enhanced involvement in care. Challenges included carer burden and clear communication. Sixteen staff (33% response rate) were interviewed. In general, staff said the service was inclusive and responsive, and the home environment beneficial, particularly for patients from culturally diverse backgrounds. A strong hospital partnership and comprehensive multidisciplinary approach were vital. Challenges included fragmentation due to part-time roles and combining with a pre-existing acute hospital in the home service.

Conclusions: This qualitative exploration of staff and patients' perceptions of a geriatrician-led, multidisciplinary geriatric evaluation and management and rehabilitation hospital in the home service demonstrated that it was person-centred and optimised patients' control and ownership of care. The inclusive service parameters ensured responsiveness to diverse needs whilst allowing earlier return home from hospital, both of which are vital for quality patient care.

目标:随着床位压力的增加,家庭医院模式正在迅速扩大。这项研究考察了患者和多学科健康专业人士对澳大利亚家庭服务中一家新的老年评估、管理和康复医院的看法。这项服务是独一无二的,因为所有年龄段的成年人都有各种康复或老年评估和管理需求。方法:采用定性描述性方法,消费者联合研究员和消费者顾问参与决策。患者反馈是在2020年8月至2022年2月期间通过纸质患者满意度调查收集的。此外,2021年7月至11月对现任和前任员工进行了访谈。对定性数据进行了反思性专题分析,对定量数据进行了描述性统计。结果:分析了患者调查(n=199,42.2%的应答率),其中60.8%的参与者年龄在75岁或以上,26.6%的参与者说英语以外的语言。与会者表示高度满意。人们表达了舒适、熟悉、方便和安心的感觉。以人为本的方法加强了对护理的参与。挑战包括照顾者的负担和清晰的沟通。采访了16名工作人员(33%的答复率)。总的来说,工作人员表示,这项服务具有包容性和响应性,家庭环境有益,尤其是对来自不同文化背景的患者。强有力的医院伙伴关系和全面的多学科方法至关重要。挑战包括兼职角色造成的碎片化,以及在家庭服务中与已有的急性医院相结合。结论:这项对工作人员和患者对老年医学专家领导的多学科老年医学评估、管理和康复医院在家庭服务中的看法的定性探索表明,这是以人为本的,并优化了患者对护理的控制和所有权。包容性的服务参数确保了对各种需求的响应,同时允许提前出院回家,这两项都对高质量的患者护理至关重要。
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引用次数: 0
A patienthood that transcends the patient: An analysis of patient research partners' narratives of involvement in a Canadian arthritis patient advisory board. 超越病人的病人身份:分析患者研究伙伴参与加拿大关节炎患者咨询委员会的叙述。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-01-01 Epub Date: 2023-08-26 DOI: 10.1177/13558196231197288
Graham G Macdonald, Jenny Leese, Alison M Hoens, Sheila Kerr, Wendy Lum, Lianne Gulka, Laura Nimmon, Linda C Li

Objectives: Incorporating the perspectives of patients and public into the conduct of research has the potential to make scientific research more democratic. This paper explores how being a patient partner on an arthritis patient advisory board shapes the patienthood of a person living with arthritis.

Methods: An analysis was undertaken of the narratives of 22 patient research partners interviewed about their experiences on the Arthritis Patient Advisory Board (APAB), based in Vancouver, Canada.

Results: Participants' motivations to become involved in APAB stemmed largely from their desire to change their relationship with their condition. APAB was a living collective project in which participants invested their hope, both for their own lives as patients and for others with the disease.

Conclusions: Our findings highlight how the journeys of patient partners connect and integrate seemingly disparate conceptions of what it means to be a patient. One's experience as a clinical 'patient' transforms into the broader notion of civic patienthood.

目的:将患者和公众的观点纳入研究工作,有可能使科学研究更加民主。本文探讨了作为关节炎患者咨询委员会的患者伙伴如何塑造关节炎患者的患者身份:方法:本文分析了 22 位受访患者研究伙伴在加拿大温哥华关节炎患者咨询委员会(APAB)中的经历:结果:参与者参与 APAB 的动机主要源于他们希望改变自己与病情的关系。APAB 是一个有生命力的集体项目,参与者在其中投入了自己的希望,既希望自己的生活是病人的生活,也希望其他患者的生活是病人的生活:我们的研究结果凸显了患者伙伴的历程是如何将看似不同的患者概念联系起来并融为一体的。一个人作为临床 "病人 "的经历转变为更广泛的公民病人概念。
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引用次数: 0
Twenty years of monitoring acute stroke care in Australia through the national stroke audit programme (1999-2019): A cross-sectional study. 澳大利亚通过国家中风审计计划监测急性中风护理20年(1999-2019):一项横断面研究。
IF 2.4 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2023-10-01 Epub Date: 2023-05-22 DOI: 10.1177/13558196231174732
Tara Purvis, Dominique A Cadilhac, Kelvin Hill, Megan Reyneke, Muideen T Olaiya, Lachlan L Dalli, Joosup Kim, Lisa Murphy, Bruce Cv Campbell, Monique F Kilkenny

Background: National organisational surveys and clinical audits to monitor and guide improvements to the delivery of evidence-based acute stroke care have been undertaken in Australia since 1999. This study aimed to determine the association between repeated national audit cycles on stroke service provision and care delivery from 1999 to 2019.

Methods: Cross-sectional study using data from organisational surveys (1999, 2004, 2007-2019) and clinical data from the biennial National Stroke Acute Audit (2007-2019). Age-, sex-, and stroke severity-adjusted proportions were reported for adherence to guideline-recommended care processes. Multivariable, logistic regression models were performed to determine the association between repeated audit cycles and service provision (organisational) and care delivery (clinical).

Results: Overall, 197 hospitals provided organisational survey data (1999-2019), with 24,996 clinical cases from 136 hospitals (around 40 cases per audit) (2007-2019). We found significant improvements in service organisation between 1999 and 2019 for access to stroke units (1999: 42%, 2019: 81%), thrombolysis services (1999: 6%, 2019: 85%), and rapid assessment/management for patients with transient ischaemic attack (1999: 11%, 2019: 61%). Analyses of patient-level audits for 2007 to 2019 found the odds of receiving care processes per audit cycle to have significantly increased for thrombolysis (2007: 3%, 2019: 11%; OR 1.15, 95% CI 1.13, 1.17), stroke unit access (2007: 52%, 2019: 69%; OR 1.15, 95% CI 1.14, 1.17), risk factor advice (2007: 40%, 2019: 63%; OR 1.10, 95% CI 1.09, 1.12), and carer training (2007: 24%, 2019: 51%; OR 1.12, 95% CI 1.10, 1.15).

Conclusions: Between 1999 and 2019, the quality of acute stroke care in Australia has improved in line with best practice evidence. Standardised monitoring of stroke care can inform targeted efforts to reduce identified gaps in best practice, and illustrate the evolution of the health system for stroke.

背景:自1999年以来,澳大利亚一直在进行国家组织调查和临床审计,以监测和指导循证急性中风护理的改进。本研究旨在确定1999年至2019年关于中风服务提供和护理提供的重复国家审计周期之间的关系。方法:使用组织调查数据(1999年、2004年、2007-2019年)和两年一次的国家中风急性审计临床数据(2007-2019)的横断面研究。根据指南推荐的护理流程,报告了年龄、性别和中风严重程度调整后的比例。采用多变量逻辑回归模型来确定重复审计周期与服务提供(组织)和护理提供(临床)之间的关系。结果:总体而言,197家医院提供了组织调查数据(1999-2019年),136家医院的24996例临床病例(每次审计约40例)(2007-2019年)。我们发现,在1999年至2019年期间,服务组织在获得卒中单元(1999:42%,2019:81%)、溶栓服务(1999:6%,2019:85%)和短暂性脑缺血发作患者的快速评估/管理(1999:11%,2019:61%)方面有了显著改善。对2007年至2019年患者水平审计的分析发现,在溶栓治疗(2007年:3%,2019年:11%;OR 1.15,95%CI 1.13,1.17)、卒中单元使用(2007年52%,2019年69%;OR 1.15、95%CI 1.14,1.17;风险因素建议(2007年40%,2019年63%;OR 1.10,95%CI 1.09,1.12)、,和护理人员培训(2007年:24%,2019年:51%;OR 1.12,95%CI 1.10,1.15)。结论:1999年至2019年间,澳大利亚急性中风护理的质量根据最佳实践证据有所提高。中风护理的标准化监测可以为减少最佳实践中已发现的差距提供有针对性的努力,并说明中风卫生系统的演变。
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引用次数: 1
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Journal of Health Services Research & Policy
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