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Methodological approaches for generating robust evidence from trials in rare diseases 从罕见病试验中获得可靠证据的方法论
IF 1.4 Q4 HEALTH POLICY & SERVICES Pub Date : 2024-09-01 DOI: 10.1016/j.zefq.2024.07.006
Ralf-Dieter Hilgers , Nicole Heussen
Generating scientific evidence from clinical trials for the treatment of rare diseases is associated with particular challenges. Standard clinical trial methodology is hardly ever appropriate in the rare disease setting, so innovative approaches need to be developed, evaluated and established. Among the various innovative methodologies introduced two approaches are discussed in more detail: the influence of randomised treatment allocation and the integration of external control information, both with respect to the level of evidence. The evaluation of the impact of randomised treatment allocation is guided by a structured approach which can be used to inform the design in the planning phase of a trial and select an appropriate randomisation procedure. Moreover, after the conduct of the trial the magnitude of actual bias can be estimated, and both a bias-adjusted treatment effect and a bias-adjusted test can be derived to put the level of reachable evidence into context. Adding external control data to randomised clinical trials appears charming with respect to small numbers of available patients but raises the question of how this can be achieved without compromising on the quality of evidence. One approach that seems promising in this respect is to check after a determined proportion of the total sample size whether the addition of external control data appears justified without compromising the pre-specified level of evidence. New approaches need to be accepted by all stakeholders. Their strengths and weaknesses in terms of reachable evidence need to be evaluated and presented in a such a way that they are comprehensible for patients, clinicians, industry, regulatory and HTA bodies.
从治疗罕见病的临床试验中获取科学证据是一项特殊的挑战。标准的临床试验方法几乎不适合罕见病,因此需要开发、评估和确立创新方法。在引入的各种创新方法中,我们将更详细地讨论两种方法:随机治疗分配的影响和外部对照信息的整合,这两种方法都与证据水平有关。对随机治疗分配影响的评估是在结构化方法的指导下进行的,该方法可用于在试验规划阶段为设计提供信息,并选择适当的随机化程序。此外,在试验进行之后,还可以估算出实际偏倚的程度,并得出偏倚调整后的治疗效果和偏倚调整后的检验结果,以确定可达到的证据水平。在随机临床试验中增加外部对照数据,对于少量可用患者来说似乎很有吸引力,但也提出了如何在不影响证据质量的前提下实现这一目标的问题。在这方面,一种似乎很有前景的方法是,在样本总量达到一定比例后,检查外部对照数据的添加是否合理,同时不影响预先指定的证据水平。新方法需要得到所有利益相关者的认可。新方法在可获得证据方面的优缺点需要进行评估,并以患者、临床医生、行业、监管机构和 HTA 机构都能理解的方式进行介绍。
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引用次数: 0
„Der Reha-Gedanke muss bei dieser Erkrankung völlig neu gedacht werden“ – Qualitative Ergebnisse einer Online-Befragung zu Erfahrungen Betroffener mit stationärer Rehabilitation bei Long/Post-COVID [对于这种疾病,康复理念必须彻底重新思考"--关于 COVID-19 后病情(长 COVID)患者住院康复体验的在线调查定性结果]。
IF 1.4 Q4 HEALTH POLICY & SERVICES Pub Date : 2024-08-01 DOI: 10.1016/j.zefq.2024.05.007

Background

In Germany, an estimated number of 70,000 people diagnosed with long COVID or post-COVID syndrome (PCS) had received inpatient medical rehabilitation by the end of 2022. Due to the heterogeneity of the clinical picture, the variability of interventions and inconsistent endpoints, previous studies on the effectiveness of rehabilitation are of limited value. It therefore remains unclear whether and to what extent rehabilitation measures established for, e.g., pulmonary, cardiovascular, or neurological diseases are suitable for patients with PCS.

Objectives

To identify the experiences and perspectives of those affected by PCS, in relation to inpatient rehabilitation and to describe patients’ values and wishes with respect to evidence-based medicine.

Methods

In January/February 2023, the German initiative “Long COVID Deutschland” conducted a retrospective online survey (39 closed items, two open answer fields) among adult PCS sufferers on their experiences with inpatient rehabilitation. Recruitment was carried out via social media and websites of patient initiatives. The open answers were analyzed using a structuring and summarizing qualitative content analysis according to Mayring, supplemented by descriptive representations of the distribution of standardized information.

Results

Of 1,191 participants in the survey, 733 used open response formats to additionally explain their experiences and the effects of individual measures on their general condition. 366 (50 %) reported that their state of health deteriorated, mainly because of strength or endurance training and too extensive treatment plans. The presence of a post-exertional malaise (PEM) or its insufficient consideration during rehabilitation was described as the main barrier. Recognition and acceptance of individual performance limits, flexible and coordinated individual treatment plans tailored to the patient’s limitations, and support in coping with the disease were described as supportive factors. From the participants’ perspective, learning strategies to avoid deterioration in their state of health due to overexertion, the so-called pacing, should be the core treatment goal for patients affected by PEM.

Discussion

The results are not statistically representative but ensure systematic insights into the subjective perspectives of those affected, the consideration of which represents one of the three principles of evidence-based medicine. The results show that for PCS patients with PEM, even minimum requirements for rehabilitation measures can lead to overexertion and aggravation.

Conclusions

Common subject-specific rehabilitation concepts appear to be only partially suitable for dealing with the symptoms and the heterogeneity of the disease. Aims and interventions should be individually adapted, and the focus should be on pacing, d

背景:在德国,截至 2022 年底,估计有 7 万名被诊断患有长期慢性乙型肝炎或慢性乙型肝炎后综合征(PCS)的患者接受了住院医疗康复治疗。由于临床表现的异质性、干预措施的多变性和终点的不一致性,以往关于康复效果的研究价值有限。因此,针对肺部、心血管或神经系统等疾病制定的康复措施是否适用于 PCS 患者以及适用程度如何仍不清楚:确定 PCS 患者在住院康复方面的经验和观点,并描述患者对循证医学的价值观和愿望:2023 年 1 月/2 月,德国 "Long COVID Deutschland "倡议组织在成年 PCS 患者中开展了一项关于住院康复经历的回顾性在线调查(39 个封闭项目,2 个开放答案区域)。调查通过社交媒体和患者倡议组织的网站进行招募。根据 Mayring 的方法,对开放式答案进行了结构化和总结性定性内容分析,并对标准化信息的分布进行了描述性表述:在 1,191 名参与调查者中,有 733 人使用了开放式回答的形式来补充说明他们的经历以及个别措施对其总体状况的影响。366人(50%)表示他们的健康状况恶化,主要原因是力量或耐力训练以及过于广泛的治疗计划。运动后不适(PEM)的存在或在康复过程中对其考虑不足被视为主要障碍。对个人能力极限的认可和接受、针对患者能力极限的灵活协调的个人治疗计划以及在应对疾病方面的支持被视为支持性因素。从参与者的角度来看,学会避免因过度劳累而导致健康状况恶化的策略,即所谓的步调,应成为 PEM 患者的核心治疗目标:讨论:研究结果不具有统计代表性,但能确保系统地了解受影响者的主观看法,而对主观看法的考虑是循证医学的三大原则之一。结果表明,对于患有肺结核的 PCS 患者来说,即使是康复措施的最低要求也会导致过度劳累和病情加重:结论:针对特定疾病的普通康复概念似乎仅部分适用于该疾病的症状和异质性。目标和干预措施应因人而异,重点应放在步调、疾病应对和管理上。在开始康复治疗之前,需要对 PEM 和康复能力进行可靠的测试,以确保患者的安全。为了对康复效果研究进行适当分类,应披露风险和副作用。
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引用次数: 0
Inhaltsverzeichnis / Table of Contents 目录
IF 1.4 Q4 HEALTH POLICY & SERVICES Pub Date : 2024-08-01 DOI: 10.1016/S1865-9217(24)00139-9
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引用次数: 0
Unerfüllte Behandlungswünsche jüngerer und älterer Menschen in sozial deprivierten Räumen: eine qualitative Interviewstudie im Ruhrgebiet [社会贫困地区年轻人和老年人未得到满足的医疗保健需求:鲁尔区定性访谈研究]。
IF 1.4 Q4 HEALTH POLICY & SERVICES Pub Date : 2024-08-01 DOI: 10.1016/j.zefq.2024.06.001
Sarah Heidenreiter, Michael Lauerer, Eckhard Nagel

Introduction

Unmet health care needs are considered a key indicator of equity in access to health care. For younger people, they can lead to poorer health outcomes in adulthood, for older people, they are associated with an increased risk of mortality. Unmet needs were therefore investigated as part of a research project on „Improving the health-related life situation of young and old people in the Ruhr area.“

Method

Unmet health care needs were surveyed with the help of semi-structured guideline interviews with younger and older people in the Ruhr area (n = 29). Due to the spatial and social structure of the study region, the aim was to recruit especially people with a low subjective social status (SSS) for the study. The interviews were recorded, transcribed, and subjected to a qualitative content analysis and a supplementary frequency analysis. The reporting is based on the Standards for Qualitative Research (SRQR).

Results

The respondents reported deficiencies in treatment and doctor-patient communication with GPs and specialists. The feeling of not being taken seriously due to age is cited several times by both age groups as a reason for unmet health care needs. Waiting times are particularly relevant in the case of specialist consultations, while co-payments for services mainly play a role in dentistry and orthodontics. Unmet needs are primarily reported by people with a medium SSS. Overall, almost two thirds of the respondents stated that they have or have had at least one unmet need. Participants with a low SSS report fewer unmet needs and do not mention any financial aspects as a cause. Explanations for this range from lower health literacy to the fear of being discredited.

Conclusions

The results provide indications of deficits in regional health care provision for younger and older people in the Ruhr region. Corresponding fields of action result from the areas of care and reasons identified as relevant for unmet health care needs. The reported findings also provide a basis for differentiated quantitative surveys with representative samples.

导言:未满足的医疗保健需求被认为是衡量医疗保健公平性的一个关键指标。对于年轻人来说,未满足的需求会导致成年后健康状况较差;对于老年人来说,未满足的需求会增加死亡风险。因此,作为 "改善鲁尔区年轻人和老年人与健康相关的生活状况 "研究项目的一部分,我们对未满足的需求进行了调查:通过对鲁尔区的年轻人和老年人(n=29)进行半结构化指导访谈,调查了未满足的医疗保健需求。考虑到研究地区的空间和社会结构,我们的目标是招募主观社会地位(SSS)较低的人群参与研究。对访谈进行了录音和转录,并进行了定性内容分析和补充频率分析。报告以定性研究标准(SRQR)为基础:结果:受访者表示在治疗以及与全科医生和专科医生的医患沟通方面存在不足。两个年龄组的受访者都多次提到,由于年龄原因而感到不被重视是医疗需求得不到满足的一个原因。等待时间与专家会诊尤为相关,而共同支付服务费用则主要是牙科和牙齿矫正方面的原因。未得到满足的需求主要是由中等自付比例的人报告的。总体而言,近三分之二的受访者表示他们至少有一项需求没有得到满足。低 SSS 水平的受访者报告的未满足需求较少,并且没有提到任何经济方面的原因。对此的解释从较低的健康知识水平到害怕被人耻笑不一而足:结论:研究结果表明,鲁尔区为年轻人和老年人提供的医疗保健服务存在不足。研究结果表明,鲁尔区在为年轻人和老年人提供医疗保健服务方面存在不足,并根据医疗保健领域和未满足医疗保健需求的原因确定了相应的行动领域。所报告的调查结果还为开展具有代表性的差异化定量调查提供了依据。
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引用次数: 0
Stakeholders’ perspectives on patient involvement in systematic reviews – Results of a World Café in Germany 利益相关者对患者参与系统综述的看法--德国世界咖啡馆的成果。
IF 1.4 Q4 HEALTH POLICY & SERVICES Pub Date : 2024-08-01 DOI: 10.1016/j.zefq.2024.06.003
Stefanie Pfisterer-Heise , Claire Iannizzi , Sarah Messer , Annika Oeser , Ulrike Holtkamp , Charlotte M. Kugler

Introduction

Patient involvement (PI) in systematic reviews (SRs) can help to improve the quality of SRs and enhance the credibility of the research process. At the same time, PI in SRs poses challenges such as the need for extra time. While several organizations and working groups from English-speaking countries provide recommendations for PI in SRs, there is a lack of current insights from stakeholders in Germany, including researchers and patients. Eliciting their perspectives is indicated, as PI in SRs in Germany might differ due to language barriers and organizational dissimilarities. For sharing and discussing stakeholders’ experiences in Germany, a workshop was facilitated. This paper summarizes the results of the workshop to elucidate stakeholders’ perspectives on key aspects of PI in SRs in Germany.

Methods

A World Café was conducted at the 2023 conference of the Network for Evidence-based Medicine. Participants at all levels of experience could take part without prior registration. The data obtained was summarized narratively in an iterative process, and a framework of the topics discussed was developed.

Results

22 participants, predominantly researchers, took part. Participants formulated several general conditions for PI in SRs such as time and transparency. The majority of the tasks described referred to the application phase and the initial phase of a SR. The development of training and information materials in plain German language was deemed essential. The application phase of an externally funded SR and patient recruitment were considered as particularly challenging.

Discussion

Several of the formulated aspects such as time and transparency are consistent with earlier work. The project start of a SR, however, has so far not been explicitly described in the literature as being of particular importance. This phase might be even more crucial to SR projects in Germany since researchers are expected to develop information materials for patients. Both the application phase and patient recruitment could be considered particularly challenging due to a lower degree of organisation of PI in Germany.

Conclusion

World Café participants described many aspects referring to the project start of a SR. This underlines that PI in SRs needs to be described as a process. A process model intertwining the phases of a SR with the respective phases of PI, ideally including best practices for each phase, could be of great value. With respect to the specific context in Germany, a greater degree of organization of PI, i. e. coordinated by an institution, could help to manage challenges such as patient recruitment.

导言:患者参与系统综述(SR)有助于提高系统综述的质量,增强研究过程的可信度。与此同时,患者参与系统综述也带来了挑战,例如需要额外的时间。虽然英语国家的一些组织和工作组就 SR 中的 PI 提出了建议,但目前缺乏来自德国利益相关者(包括研究人员和患者)的见解。由于语言障碍和组织结构的不同,德国的性病治疗机构中的性病检查可能会有所不同,因此有必要征求他们的意见。为了分享和讨论德国利益相关者的经验,我们组织了一次研讨会。本文总结了该研讨会的成果,以阐明利益相关者对德国员工代表机构绩效指标关键方面的看法:方法:在 2023 年循证医学网络会议期间举办了世界咖啡馆。所有经验水平的与会者均可参加,无需事先登记。结果:22 位与会者(主要是研究人员)参加了此次活动。与会者提出了工作人员代表中个人参与的几个一般条件,如时间和透明度。所描述的大多数任务都涉及工作人员代表的申请阶段和初始阶段。以通俗易懂的德语编写培训和信息材料被认为是至关重要的。外部资助的性健康标准的申请阶段和患者招募被认为特别具有挑战性:讨论:所提出的几个方面,如时间和透明度,与之前的工作是一致的。然而,迄今为止,文献中还没有明确指出 SR 项目的启动阶段具有特别重要的意义。在德国,这一阶段可能对 SR 项目更为重要,因为研究人员要为患者编写信息资料。在德国,由于 PI 的组织程度较低,申请阶段和患者招募都可能被视为特别具有挑战性:世界咖啡馆 "的参与者描述了与性健康研究项目启动有关的许多方面。这突出表明,需要将 SR 中的 PI 描述为一个过程。将工作人员代表的各个阶段与项目实施的各个阶段交织在一起的过程模型(最好包括每个阶段的最佳做法)可能具有重要价值。就德国的具体情况而言,提高 PI 的组织化程度,即由一个机构进行协调,有助于应对病人招募等挑战。
{"title":"Stakeholders’ perspectives on patient involvement in systematic reviews – Results of a World Café in Germany","authors":"Stefanie Pfisterer-Heise ,&nbsp;Claire Iannizzi ,&nbsp;Sarah Messer ,&nbsp;Annika Oeser ,&nbsp;Ulrike Holtkamp ,&nbsp;Charlotte M. Kugler","doi":"10.1016/j.zefq.2024.06.003","DOIUrl":"10.1016/j.zefq.2024.06.003","url":null,"abstract":"<div><h3>Introduction</h3><p>Patient involvement (PI) in systematic reviews (SRs) can help to improve the quality of SRs and enhance the credibility of the research process. At the same time, PI in SRs poses challenges such as the need for extra time. While several organizations and working groups from English-speaking countries provide recommendations for PI in SRs, there is a lack of current insights from stakeholders in Germany, including researchers and patients. Eliciting their perspectives is indicated, as PI in SRs in Germany might differ due to language barriers and organizational dissimilarities. For sharing and discussing stakeholders’ experiences in Germany, a workshop was facilitated. This paper summarizes the results of the workshop to elucidate stakeholders’ perspectives on key aspects of PI in SRs in Germany.</p></div><div><h3>Methods</h3><p>A World Café was conducted at the 2023 conference of the Network for Evidence-based Medicine. Participants at all levels of experience could take part without prior registration. The data obtained was summarized narratively in an iterative process, and a framework of the topics discussed was developed.</p></div><div><h3>Results</h3><p>22 participants, predominantly researchers, took part. Participants formulated several general conditions for PI in SRs such as time and transparency. The majority of the tasks described referred to the application phase and the initial phase of a SR. The development of training and information materials in plain German language was deemed essential. The application phase of an externally funded SR and patient recruitment were considered as particularly challenging.</p></div><div><h3>Discussion</h3><p>Several of the formulated aspects such as time and transparency are consistent with earlier work. The project start of a SR, however, has so far not been explicitly described in the literature as being of particular importance. This phase might be even more crucial to SR projects in Germany since researchers are expected to develop information materials for patients. Both the application phase and patient recruitment could be considered particularly challenging due to a lower degree of organisation of PI in Germany.</p></div><div><h3>Conclusion</h3><p>World Café participants described many aspects referring to the project start of a SR. This underlines that PI in SRs needs to be described as a process. A process model intertwining the phases of a SR with the respective phases of PI, ideally including best practices for each phase, could be of great value. With respect to the specific context in Germany, a greater degree of organization of PI, i.<!--> <!-->e. coordinated by an institution, could help to manage challenges such as patient recruitment.</p></div>","PeriodicalId":46628,"journal":{"name":"Zeitschrift fur Evidenz Fortbildung und Qualitaet im Gesundheitswesen","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S1865921724001156/pdfft?md5=11c94b2cd7843dc0631effabe158711f&pid=1-s2.0-S1865921724001156-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141753097","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
World views on shortage in nursing resource: Challenges and opportunities 关于护理资源短缺的世界观点:挑战与机遇。
IF 1.4 Q4 HEALTH POLICY & SERVICES Pub Date : 2024-08-01 DOI: 10.1016/j.zefq.2024.05.009

Background

Shortage in nursing resource results from the combination of a lack of nurses, an increased patient volume and workload, and other factors. This seems to be a worldwide phenomenon, leading to multiple health care related challenges and a decreased quality of care, but is different in extent in high- vs. low-income countries. An international perspective can alleviate challenges to keep our patients safe through increasing our health workers' safety.

Purpose & Method

To exchange experiences with the shortage in nursing resource globally, an international online conference event was hosted. Speakers from Germany, the Philippines, Poland, Tanzania, the United Kingdom and the United States presented their national challenges and strategies to deal with this phenomenon.

Results

Conference presentations included information about the health care systems, comparable numbers of hospital beds, nurses, and nursing education. Speakers reported challenges such as an imbalance between a high nurse vacancy rate and demands, but also war and refugees, high human immunodeficiency virus (HIV) and other infection rates, or nurses’ migration to other countries; the solutions reported included buy-in from other countries, nurses-attracting projects such as Magnet hospitals, improved job opportunities like higher wages, career prospects, or improved education, and others.

Conclusions

Shortage in nursing resource seems to be a global phenomenon. Nursing managers and researchers should exchange and communicate challenges and solutions continuously and cooperate globally.

背景:护士资源短缺是由护士缺乏、病人数量和工作量增加以及其他因素共同造成的。这似乎是一个世界性的现象,导致了多种与医疗保健相关的挑战和护理质量的下降,但在高收入国家和低收入国家的程度不同。从国际视角出发,可以通过提高医务工作者的安全性来缓解挑战,从而保证患者的安全:为了在全球范围内交流护理资源短缺的经验,我们举办了一次国际在线会议活动。来自德国、菲律宾、波兰、坦桑尼亚、英国和美国的发言人介绍了各自国家面临的挑战以及应对这一现象的策略:会议发言包括有关医疗保健系统、可比病床数量、护士和护理教育的信息。发言者报告了护士高空缺率与需求之间的不平衡、战争与难民、高人类免疫缺陷病毒(HIV)和其他感染率或护士移民到其他国家等挑战;报告的解决方案包括其他国家的支持、吸引护士的项目(如磁性医院)、改善工作机会(如提高工资、职业前景或改善教育)等:护士资源短缺似乎是一个全球现象。结论:护理资源短缺似乎是一个全球现象,护理管理者和研究人员应不断交流和沟通所面临的挑战和解决方案,并在全球范围内开展合作。
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引用次数: 0
Veränderungen in der Bereitstellung und Inanspruchnahme der Gesundheitsversorgung in deutschen Hausarztpraxen während der COVID-19-Pandemie – eine Befragung von Patient*innen in drei Bundesländern [COVID-19大流行期间德国初级医疗机构提供和利用医疗服务的变化--对三个联邦州病人的调查]。
IF 1.4 Q4 HEALTH POLICY & SERVICES Pub Date : 2024-08-01 DOI: 10.1016/j.zefq.2024.06.002
Doreen Kuschick , Jutta Bleidorn , Marius Tibor Dierks , Christoph Heintze , Markus Krause , Lisa Kümpel , Burgi Riens , Liliana Rost , Kahina Toutaoui , Florian Wolf , Susanne Döpfmer

Introduction

During the COVID-19 pandemic general practitioners (GP) practice teams were temporally confronted with major challenges which were accompanied by changes in practice organization and service provision. So far, little has been known about the views of patients who visited the GP practice for other than COVID-related reasons with regard to provision and use of GP services, the adjustments in the practice and the work of the practice team members.

Methods

The patient survey is a sub-study of the mixed-methods study VeCo-Praxis (GP healthcare for patients not suffering from COVID during the Corona pandemic) of the research practice network RESPoNsE (Research Practice Network East), which was conducted in the federal states of Berlin, Brandenburg and Thuringia. The questionnaire-based survey was carried out among patients who visited their GP practice in November 2022. The topics covered in the survey were developed by two focus groups consisting of 13 members of the RESPoNsE patient advisory board. The questionnaire was developed and piloted in a participatory approach with the RESPoNsE Patient Advisory Board. The results were analyzed descriptively using SPSS and discussed with the advisory board.

Results

1,405 questionnaires from 37 practices were analyzed. 97% of respondents felt that the treatment they received at their GP practice during the COVID-19 pandemic was good. For the vast majority, appointments and acute consultations, prescriptions, laboratory tests, discussions of diagnostic results, routine follow-up check-ups and health checks were available to a sufficient extent. From the patients’ perspective, the practices have successfully adapted to the challenges caused by COVID-19. Overall, the patients’ trust in and their appreciation of the work of the practice staff have increased since the pandemic. Patients stated that GP practices should continue hygiene procedures, such as wearing a mask or keeping physical distance, in the future.

Discussion

Despite multiple reports of a significant decline in both provision and utilization of standard care in GP practices during the pandemic, our survey showed that the majority of patients felt that they received adequate GP care and were highly satisfied. The results should be interpreted against the background of possible selection bias.

Conclusion

In this survey, GP patients were predominantly appreciative of GP care during the COVID-19 pandemic. The patients’ assessment of the provision and use of GP services during the pandemic complements the corresponding perspective of GPs and medical practice assistants.

导言:在 COVID-19 大流行期间,全科医生(GP)实践团队在时间上面临着重大挑战,实践组织和服务提供也随之发生了变化。迄今为止,人们对因 COVID 相关原因以外的原因到全科医生诊所就诊的患者对全科医生服务的提供和使用、诊所的调整以及诊所团队成员的工作的看法知之甚少:患者调查是研究实践网络 RESPoNsE(研究实践网络东部)的混合方法研究 VeCo-Praxis(科罗娜大流行期间非 COVID 患者的全科医生医疗保健)的子研究,该研究在柏林、勃兰登堡和图林根三个联邦州进行。问卷调查的对象是 2022 年 11 月到全科医生诊所就诊的患者。调查所涉及的主题是由 RESPoNsE 患者咨询委员会的 13 名成员组成的两个焦点小组制定的。调查问卷由 RESPoNsE 患者咨询委员会以参与式方法制定和试行。使用 SPSS 对结果进行了描述性分析,并与咨询委员会进行了讨论:对来自 37 家诊所的 1 405 份问卷进行了分析。97%的受访者认为,在 COVID-19 大流行期间,他们在全科医生诊所接受的治疗效果良好。对绝大多数人来说,预约和急性会诊、处方、化验、诊断结果讨论、常规随访检查和健康检查都能得到充分满足。从患者的角度来看,诊所已成功适应了 COVID-19 带来的挑战。总体而言,自大流行以来,患者对诊所工作人员的信任和工作的赞赏都有所提高。患者表示,全科医生诊所今后应继续执行卫生程序,如戴口罩或保持身体距离:讨论:尽管有多份报告称,在大流行期间,全科医生诊所提供的标准护理服务和使用率均大幅下降,但我们的调查显示,大多数患者认为他们得到了充分的全科医生护理服务,并且非常满意。在解释这些结果时,应考虑到可能存在的选择偏差:在这项调查中,全科医生病人主要对 COVID-19 大流行期间的全科医生护理表示赞赏。患者对大流行期间全科医生服务的提供和使用情况的评估补充了全科医生和医疗实践助理的相应观点。
{"title":"Veränderungen in der Bereitstellung und Inanspruchnahme der Gesundheitsversorgung in deutschen Hausarztpraxen während der COVID-19-Pandemie – eine Befragung von Patient*innen in drei Bundesländern","authors":"Doreen Kuschick ,&nbsp;Jutta Bleidorn ,&nbsp;Marius Tibor Dierks ,&nbsp;Christoph Heintze ,&nbsp;Markus Krause ,&nbsp;Lisa Kümpel ,&nbsp;Burgi Riens ,&nbsp;Liliana Rost ,&nbsp;Kahina Toutaoui ,&nbsp;Florian Wolf ,&nbsp;Susanne Döpfmer","doi":"10.1016/j.zefq.2024.06.002","DOIUrl":"10.1016/j.zefq.2024.06.002","url":null,"abstract":"<div><h3>Introduction</h3><p>During the COVID-19 pandemic general practitioners (GP) practice teams were temporally confronted with major challenges which were accompanied by changes in practice organization and service provision. So far, little has been known about the views of patients who visited the GP practice for other than COVID-related reasons with regard to provision and use of GP services, the adjustments in the practice and the work of the practice team members.</p></div><div><h3>Methods</h3><p>The patient survey is a sub-study of the mixed-methods study VeCo-Praxis (GP healthcare for patients not suffering from COVID during the Corona pandemic) of the research practice network RESPoNsE (Research Practice Network East), which was conducted in the federal states of Berlin, Brandenburg and Thuringia. The questionnaire-based survey was carried out among patients who visited their GP practice in November 2022. The topics covered in the survey were developed by two focus groups consisting of 13 members of the RESPoNsE patient advisory board. The questionnaire was developed and piloted in a participatory approach with the RESPoNsE Patient Advisory Board. The results were analyzed descriptively using SPSS and discussed with the advisory board.</p></div><div><h3>Results</h3><p>1,405 questionnaires from 37 practices were analyzed. 97% of respondents felt that the treatment they received at their GP practice during the COVID-19 pandemic was good. For the vast majority, appointments and acute consultations, prescriptions, laboratory tests, discussions of diagnostic results, routine follow-up check-ups and health checks were available to a sufficient extent. From the patients’ perspective, the practices have successfully adapted to the challenges caused by COVID-19. Overall, the patients’ trust in and their appreciation of the work of the practice staff have increased since the pandemic. Patients stated that GP practices should continue hygiene procedures, such as wearing a mask or keeping physical distance, in the future.</p></div><div><h3>Discussion</h3><p>Despite multiple reports of a significant decline in both provision and utilization of standard care in GP practices during the pandemic, our survey showed that the majority of patients felt that they received adequate GP care and were highly satisfied. The results should be interpreted against the background of possible selection bias.</p></div><div><h3>Conclusion</h3><p>In this survey, GP patients were predominantly appreciative of GP care during the COVID-19 pandemic. The patients’ assessment of the provision and use of GP services during the pandemic complements the corresponding perspective of GPs and medical practice assistants.</p></div>","PeriodicalId":46628,"journal":{"name":"Zeitschrift fur Evidenz Fortbildung und Qualitaet im Gesundheitswesen","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S1865921724001144/pdfft?md5=b4f22db20fd9ba3de83d1882aa1766ba&pid=1-s2.0-S1865921724001144-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141753095","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Liste der Affiliierten Institute und Fachgesellschaften / List of Affiliations Affiliierten Institute und Fachgesellschaften / 关联机构列表
IF 1.4 Q4 HEALTH POLICY & SERVICES Pub Date : 2024-08-01 DOI: 10.1016/S1865-9217(24)00141-7
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引用次数: 0
Einflussfaktoren auf die eigene Anwendung der Sepsis-Kompetenz und ihre Förderung bei Patientinnen und Patienten: Ergebnisse einer Mixed-Methods-Studie mit Gesundheitsfachpersonen [影响医护人员使用败血症相关能力的因素,以及他们如何向患者宣传败血症知识:针对医疗专业人员的混合方法研究结果]。
IF 1.4 Q4 HEALTH POLICY & SERVICES Pub Date : 2024-08-01 DOI: 10.1016/j.zefq.2024.04.006

Background

Sepsis is a life-threatening and relatively common emergency which is often recognized too late or not at all. Therefore, the “SepsisWissen” (SepsisKnowledge) project aimed to bring about changes in health care professionals’ behavior in the area of sepsis prevention and early detection. It addressed the health care professionals themselves (e. g., their own vaccination, hygiene and early detection behavior) and their patient counseling behavior. To promote this behavior, the SepsisWissen campaign included offers such as trainings or print products. The subsequent core question is: From the health professionals’ perspective, which barriers and facilitators affect their own application of sepsis competence and their promotion of their patients’ sepsis competence?

Methods

This paper was based on a cross-sectional mixed-methods study part of “SepsisWissen” with

  • a)

    semi-structured interviews with 17 providers and

  • b)

    a quantitative survey among 135 providers.

Part a) was analyzed using qualitative oriented content analysis based on Mayring, part b) was analyzed descriptively.

The interviewees included physicians, nurses, pharmacists, assistants to physicians and pharmacists and, additionally, one paramedic in the quantitative sample. Some of them had attended “SepsisWissen” trainings.

Results

The qualitative data analysis identified 41 conducive and hindering factors, which can be assigned to the following eight major topics: 1) syndrome sepsis; 2) predisposing factors for health professionals' own acquisition and application of sepsis competence; 3) enabling factors for health professionals themselves; 4) behavior and lifestyle of patients; 5) reinforcing factors for patients; 6) public health education; 7) political, administrative, and organizational context; 8) environmental factors. In the qualitative and quantitative surveys, the suggestion to improve the sepsis competence of the population and to reduce misinformation, respectively, through public education (e. g., via schools or the media).

Discussion

Sepsis training for health professionals was considered as a facilitating factor for taking potential sepsis symptoms and patients’ respective statements more seriously. Future training formats should convey more explicitly how health professionals can better communicate their own sepsis knowledge to their patients. They request instruments to support their communication, such as checklists for lay persons. According to the interviews, health workers themselves need recurring external reminders for the topic of sepsis. Organizational and political conditions should be improved. From the health professionals’ point of view, it is essential to offer better reimbursement for prevention and counseling services and to allocate adequate time resource

背景:败血症是一种危及生命且较为常见的急症,通常被发现时已为时过晚或根本没有发现。因此,"败血症知识"(SepsisWissen)项目旨在改变医护人员在败血症预防和早期检测方面的行为。该项目针对医护人员本身(如他们自身的疫苗接种、卫生和早期检测行为)以及他们的病人咨询行为。为了促进这种行为,SepsisWissen 活动包括提供培训或印刷产品等服务。随后的核心问题是从医疗专业人员的角度来看,哪些障碍和促进因素会影响他们自身脓毒症能力的应用以及他们对患者脓毒症能力的促进?本文基于 "脓毒症知识"(SepsisWissen)的一项横断面混合方法研究,其中 a) 部分采用基于 Mayring 的定性内容分析,b) 部分采用描述性分析。受访者包括医生、护士、药剂师、医生助理和药剂师,定量样本中还包括一名辅助医务人员。其中一些人参加过 "败血症知识 "培训:定性数据分析确定了 41 个有利和不利因素,可归纳为以下八个主要议题:1) 败血症综合征;2) 医护人员自身获得和应用败血症能力的倾向性因素;3) 医护人员自身的有利因素;4) 患者的行为和生活方式;5) 患者的强化因素;6) 公共卫生教育;7) 政治、行政和组织背景;8) 环境因素。在定性和定量调查中,分别建议通过公共教育(如通过学校或媒体)提高民众的败血症能力和减少错误信息:讨论:对医护人员进行败血症培训被认为是更认真对待潜在败血症症状和患者相关陈述的促进因素。未来的培训形式应更明确地传达医护人员如何更好地向患者传达败血症知识。他们要求提供一些工具来支持他们的交流,例如为非专业人员提供核对表。根据访谈,医护人员本身也需要经常性地从外部提醒他们有关败血症的话题。应改善组织和政治条件。从医疗专业人员的角度来看,必须为预防和咨询服务提供更好的补偿,并为两者分配充足的时间资源:结论:如果总体条件得到优化,医疗专业人员可以提高应用和促进败血症能力的潜力。从他们的角度来看,最重要的是通过开展更多的公共教育来减轻他们在病人咨询方面的负担。
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引用次数: 0
Herausgeberkollegium / Editorial Board 编辑委员会
IF 1.4 Q4 HEALTH POLICY & SERVICES Pub Date : 2024-08-01 DOI: 10.1016/S1865-9217(24)00138-7
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引用次数: 0
期刊
Zeitschrift fur Evidenz Fortbildung und Qualitaet im Gesundheitswesen
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