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The impact of COVID-19 on clinical research: the PIPPRA and MEDRA experience COVID-19对临床研究的影响:PIPPRA和MEDRA的经验
Pub Date : 2023-11-10 DOI: 10.12688/hrbopenres.13283.2
Louise Larkin, Tala Raad, Anusha Moses, Alexander Fraser, Stephen Gallagher, Bente Appel Esbensen, Liam Glynn, Anne Griffin, Audrey C Tierney, Norelee Kennedy
Background Coronavirus disease 2019 (COVID-19) has had a significant impact on clinical research. This paper aims to provide an insight into how the COVID-19 pandemic, associated public health restrictions and international guidance on the conduct of clinical research impacted two clinical rheumatology research trials - the Physiotherapist-led Intervention to Promote Physical Activity in Rheumatoid Arthritis (PIPPRA) and the MEDiterranean diet in Rheumatoid Arthritis (MEDRA) projects. Methods The March 2019 public health restrictions imposed to mitigate the risk of COVID-19 occurred at a time when PIPPRA was in the process of delivering assessment and intervention on a face-to-face basis (n=48) and MEDRA had commenced recruitment. Participants in PIPPRA and MEDRA had a diagnosis of rheumatoid arthritis, with some being immunosuppressed and thus at a higher risk for COVID-19. The decision-making processes of both trials is outlined to demonstrate the required amendments to continue in the context of the COVID-19 pandemic. Results Amendments to PIPPRA and MEDRA trial protocols were agreed and received ethical and funder approval. Both trials switched from a face-to-face delivery to a telehealth using online platforms. The PIPPRA study was paused for five months (April-August 2020), resulting in n=33 (60%) negative deviations from assessment protocol. MEDRA switched from face-to-face to online recruitment with 20% (n=35/44) negative deviations in recruitment. Of the n=18 participants who consented to participating in a face-to-face trial, just n=2 (11%) opted to engage with telehealth delivery of the intervention. MEDRA assessment and intervention deviations were 100% as no sessions were completed as planned in 2020. Conclusions The COVID-19 pandemic has severely impacted the PIPPRA and MEDRA clinical trials. Moving face-to-face clinical research to telehealth delivery may not be the panacea it is purported to be. Our experiences may be of benefit to researchers, clinicians, and funders in seeking to continue clinical research during a global pandemic.
2019冠状病毒病(COVID-19)对临床研究产生了重大影响。本文旨在深入了解COVID-19大流行、相关公共卫生限制和国际临床研究指导如何影响两项临床风湿病研究试验——物理治疗师主导的促进类风湿关节炎身体活动干预(PIPPRA)和类风湿关节炎地中海饮食(MEDRA)项目。方法2019年3月为降低COVID-19风险而实施的公共卫生限制发生在PIPPRA正在进行面对面评估和干预的过程中(n=48), MEDRA已经开始招募。PIPPRA和MEDRA的参与者被诊断为类风湿性关节炎,其中一些人免疫抑制,因此感染COVID-19的风险更高。本文概述了这两项试验的决策过程,以说明在COVID-19大流行背景下继续进行所需的修改。结果对PIPPRA和MEDRA试验方案的修改得到了同意,并获得了伦理和资金的批准。这两项试验都从面对面交付转变为使用在线平台的远程医疗。PIPPRA研究暂停了5个月(2020年4月至8月),导致n=33(60%)与评估方案负偏差。MEDRA从面对面招聘转向在线招聘,招聘负偏差为20% (n=35/44)。在同意参加面对面试验的n=18名参与者中,只有n=2(11%)选择参与远程医疗干预。MEDRA评估和干预偏差为100%,因为2020年没有按计划完成任何会议。结论新冠肺炎疫情严重影响了PIPPRA和MEDRA临床试验。将面对面的临床研究转移到远程医疗服务可能并不是所谓的灵丹妙药。我们的经验可能对在全球大流行期间寻求继续进行临床研究的研究人员、临床医生和资助者有益。
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引用次数: 0
Patient and clinician perspectives of online-delivered exercise programmes for chronic musculoskeletal conditions: protocol for a mixed-methods systematic review. 慢性肌肉骨骼疾病在线运动项目的患者和临床医生观点:混合方法系统评价方案
Pub Date : 2023-11-07 DOI: 10.12688/hrbopenres.13551.2
Avantika Bhardwaj, Caoimhe Barry Walsh, Allison Ezzat, Cliona O'Riordan, Norelee Kennedy, Clodagh M. Toomey
Background Despite the growing economic and social impact of chronic musculoskeletal (MSK) conditions, there has been low uptake of clinical guidelines for management, owing partly to the negative perceptions of patients and clinicians of their appropriateness and accessibility. Online-delivered exercise programmes (ODEPs) offer an alternative that can reduce costs and offer convenience for those with mobility limitations. As such, investigating participants’ perceptions of such programmes provides insight into the complexity and interplay of factors associated with uptake and optimization of implementation strategies. Objectives This study aims to systematically review of the literature of patients’ and clinicians’ perceptions of ODEPs for chronic MSK conditions. Methods To ensure the likelihood of identifying all relevant published articles, the following databases will be searched from inception to end of the project: CINAHL Complete, MEDLINE, SportDiscus, AMED, APA PsycArticles, APA PsycInfo, Scopus, and Cochrane Library. Included articles will qualitatively and/or quantitatively report the perceptions of participants of ODEPs for chronic MSK conditions. ODEPs are defined as either (a) synchronous, participants can exchange information simultaneously, or (b) asynchronous, with at least one synchronous feature, or (c) neither, where the authors investigate a participant’s past experiences and/or likelihood of participating in such a programme. Article screening and quality assessment using the Critical Appraisal Skills Programme (CASP) checklists will be performed by two independent reviewers. All findings from included articles will be extracted and coded using a thematic synthesis approach. Discussion It is important to offer diverse resources to address the growing public health burden of chronic MSK conditions. This study will explore patients and clinicians’ perceptions of ODEPs including needs, appropriateness and acceptability. Our findings could be used by policy makers, clinicians, and researchers to generate new models of care that could influence the uptake and long-term sustainability of ODEPs for chronic MSK conditions. PROSPERO registration CRD42021273773.
背景:尽管慢性肌肉骨骼疾病(MSK)对经济和社会的影响越来越大,但临床管理指南的使用率却很低,部分原因是患者和临床医生对其适当性和可及性的负面看法。在线运动项目(odep)提供了另一种选择,可以降低成本,并为行动不便的人提供便利。因此,调查参与者对这类方案的看法,可以深入了解与吸收和优化执行战略有关的因素的复杂性和相互作用。目的本研究旨在系统回顾患者和临床医生对慢性MSK疾病ODEPs的看法。为了确保识别所有相关已发表文章的可能性,从项目开始到结束,将检索以下数据库:CINAHL Complete, MEDLINE, SportDiscus, AMED, APA PsycArticles, APA PsycInfo, Scopus和Cochrane Library。纳入的文章将定性和/或定量地报告odep参与者对慢性MSK状况的看法。odep被定义为(a)同步的,参与者可以同时交换信息;或(b)异步的,至少有一个同步特征;或(c)两者都不是,作者调查参与者过去的经历和/或参与此类计划的可能性。文章筛选和质量评估使用关键评估技能计划(CASP)清单将由两名独立审稿人执行。将使用主题综合方法提取和编码纳入文章的所有发现。重要的是提供各种资源来解决慢性MSK疾病日益增加的公共卫生负担。本研究将探讨患者和临床医生对odep的看法,包括需求、适当性和可接受性。我们的研究结果可以被政策制定者、临床医生和研究人员用来产生新的护理模式,这些模式可能会影响慢性MSK疾病的odep的吸收和长期可持续性。普洛斯彼罗注册号CRD42021273773。
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引用次数: 0
Prehospital characteristics that identify major trauma patients: A hybrid systematic review protocol 识别重大创伤患者的院前特征:一种混合系统评价方案
Pub Date : 2023-11-07 DOI: 10.12688/hrbopenres.13730.2
Nora Donnelly, Matthew Linvill, Ricardo Zaidan, Andrew Simpson, Louise Brent, Pamela Hickey, Siobhan Masterson, Conor Deasy, Frank Doyle
Background International evidence has demonstrated significant improvements both in the trauma care process and outcomes for patients through re-configuring care services from that which is fragmented to integrated trauma networks. A backbone of any trauma network is a trauma triage tool. This is necessary to support paramedic staff in identifying major trauma patients based on prehospital characteristics. However, there is no consensus on an optimal triage tool and with that, no consensus on the minimum criteria for prehospital identification of major trauma. Objective Examine the prehospital characteristics applied in the international literature to identify major trauma patients. Methods To ensure the systematic review is both as comprehensive and complete as possible, we will apply a hybrid overview of reviews approach in accordance with best practice guidelines. Searches will be conducted in Pubmed (Ovid MEDLINE), Embase, Cochrane Library of Systematic Reviews and Cochrane Central Register of Clinical Trials. We will search for papers that analyse prehospital characteristics applied in trauma triage tools that identify major trauma patients. These papers will be all systematic reviews in the area, not limited by year of publication, supplemented with an updated search of original papers from November 2019. Duplication screening of all articles will be conducted by two reviewers and a third reviewer to arbitrate disputes. Data will be extracted using a pre-defined data extraction form, and quality appraised by the Newcastle Ottawa Quality Assessment form. Conclusions An exhaustive search for both systematic reviews and original papers will identify the range of tools developed in the international literature and, importantly, the prehospital characteristics that have been applied to identify major trauma patients. The findings of this review will inform the development of a national clinical prediction rule for triage of major trauma patients.
国际证据表明,通过重新配置护理服务,从碎片化到综合创伤网络,创伤护理过程和患者的结果都有显著改善。任何创伤网络的支柱都是创伤分诊工具。这对于支持护理人员根据院前特征识别重大创伤患者是必要的。然而,对于最佳的分诊工具并没有达成共识,因此对于院前识别重大创伤的最低标准也没有达成共识。目的探讨国际文献中用于鉴定重大创伤患者的院前特征。方法:为了确保系统评审尽可能全面和完整,我们将根据最佳实践指南应用综合评审方法。检索将在Pubmed (Ovid MEDLINE), Embase, Cochrane系统评价图书馆和Cochrane临床试验中心注册中进行。我们将搜索那些分析院前特征的论文,这些特征应用于识别主要创伤患者的创伤分诊工具。这些论文都是该领域的系统综述,不受发表年份的限制,并补充了2019年11月以来对原始论文的更新检索。所有文章的重复筛选将由两名审稿人和第三名审稿人进行仲裁。数据将使用预定义的数据提取表进行提取,并通过纽卡斯尔渥太华质量评估表进行质量评估。对系统综述和原始论文的详尽搜索将确定国际文献中开发的工具的范围,重要的是,院前特征已被用于识别重大创伤患者。本综述的发现将为重大创伤患者分诊的国家临床预测规则的制定提供信息。
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引用次数: 0
Dementia research in Ireland: What should we prioritise? 爱尔兰的痴呆症研究:我们应该优先考虑什么?
Pub Date : 2023-11-02 eCollection Date: 2023-01-01 DOI: 10.12688/hrbopenres.13563.2
Carol Rogan, Bernadette Rock, Emer Begley, Barry Boland, Kevin Brazil, Unai Diaz-Orueta, Sarah Donnelly, Michael Foley, Tony Foley, Caoimhe Hannigan, Louise Hopper, Fiona Keogh, Brian Lawlor, Iracema Leroi, Cora O'Neill, Laura O'Philbin, Maria Pertl, Dominic Trépel, Seán Kennelly

Background: Dementia research prioritisation allows for the systematic allocation of investment in dementia research by governments, funding agencies and the private sector. There is currently a lack of information available in Ireland regarding priority areas for dementia research. To address this gap, a dementia research prioritisation exercise was undertaken, consisting of an online survey of professionals in the dementia field and workshops for people living with dementia and family carers.

Methods: (1) An anonymous online survey of professionals, based on an existing WHO global survey: the global survey was adapted to an Irish context and participants were asked to score 65 thematic research avenues under five criteria; (2) A mixed-methods exercise for people living with dementia and family carers: this involved two facilitated workshops where participants voted on the research themes they felt were important to them and should be addressed through research.

Results: Eight of the top ten research priorities in the survey of professionals ( n=108) were focused on the delivery and quality of care and services for people with dementia and carers. Other research avenues ranked in the top ten focused on themes of timely and accurate diagnosis of dementia in primary health-care practices and diversifying therapeutic approaches in clinical trials. Participants in the workshops ( n=13) ranked 'better drugs and treatment for people with dementia', 'dementia prevention/ risk reduction' and 'care for people with dementia and carers' as their top priority areas.

Conclusions: Findings from this prioritisation exercise will inform and motivate policymakers, funders and researchers to support and conduct dementia-focused research and ensure that the limited resources made available are spent on research that has the most impact for those who will benefit from and use the results of research.

背景:痴呆研究优先排序允许政府、资助机构和私营部门对痴呆研究进行系统的投资分配。目前,爱尔兰缺乏关于痴呆症研究优先领域的信息。为了解决这一差距,开展了一项痴呆症研究优先排序工作,包括对痴呆症领域的专业人员进行在线调查,并为痴呆症患者和家庭护理人员举办讲习班。方法:(1)根据现有的世卫组织全球调查,对专业人员进行匿名在线调查:全球调查根据爱尔兰的情况进行了调整,要求参与者根据五个标准对65个主题研究途径进行评分;(2)针对痴呆症患者和家庭护理人员的混合方法练习:这包括两个便利的研讨会,参与者对他们认为对他们重要且应该通过研究解决的研究主题进行投票。结果:在对专业人员的调查中,十大研究重点中有八个(n=108)集中在为痴呆症患者和护理人员提供护理和服务的交付和质量上。排名前十的其他研究途径侧重于在初级保健实践中及时和准确诊断痴呆症以及在临床试验中使治疗方法多样化的主题。研讨会的参与者(n=13)将“为痴呆症患者提供更好的药物和治疗”、“痴呆症预防/降低风险”和“对痴呆症患者和护理人员的护理”列为他们的首要优先领域。结论:这项优先排序工作的结果将为政策制定者、资助者和研究人员提供信息并激励他们支持和开展以痴呆症为重点的研究,并确保将有限的可用资源用于对那些将从研究结果中受益和使用研究结果的人产生最大影响的研究。
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引用次数: 0
Outcomes of out-of-hospital cardiac arrest in Ireland 2012-2020: Protocol for an observational study 2012-2020年爱尔兰院外心脏骤停的结局:一项观察性研究方案
Pub Date : 2023-10-31 DOI: 10.12688/hrbopenres.13699.2
Tomás Barry, Alice Kasemiire, Martin Quinn, Conor Deasy, Gerard Bury, Siobhan Masterson, Ricardo Segurado, Andrew Murphy
Background Out-of-hospital cardiac arrest (OHCA) is a leading cause of preventable mortality that now affects almost 3,000 people each year in Ireland. Survival is low at 6–7%, compared to a European average of 8%. The Irish Out-of-Hospital Cardiac Registry (OHCAR) prospectively gathers data on all OHCA in Ireland where emergency medical services attempted resuscitation. The Irish health system has undergone several developments that are relevant to OHCA care in the period 2012–2020. OHCAR data provides a means of exploring temporal trends in OHCA incidence, care, and outcomes over time. It also provides a means of exploring whether system developments were associated with a change in key outcomes. This research aims to summarise key trends in available OHCAR data from the period 2012 – 2020, to explore and model predictors of bystander CPR, bystander defibrillation, and survival, and to explore the hypothesis that significant system level temporal developments were associated with improvements in these outcomes. Methods The following protocol sets out the relevant background and research approach for an observational study that will address the above aims. Key trends in available OHCAR data (2012 – 2020) will be described and evaluated using descriptive summaries and graphical displays. Multivariable logistic regression will be used to model predictors of ‘bystander CPR’, ‘bystander defibrillation’ and ‘survival to hospital discharge’ and to explore the effects (if any) of system level developments in 2015/2016 and the COVID-19 pandemic (2020) on these outcomes. Discussion The findings of this research will be used to understand temporal trends in the care processes and outcomes for OHCA in Ireland over the period 2012-2020. The results can further be used to optimise future health system developments for OHCA in both Ireland and internationally.
院外心脏骤停(OHCA)是可预防的死亡的主要原因,目前在爱尔兰每年影响近3 000人。生存率低至6-7%,而欧洲的平均生存率为8%。爱尔兰院外心脏登记(OHCAR)前瞻性地收集了爱尔兰所有院外心脏登记的数据,其中紧急医疗服务试图复苏。爱尔兰卫生系统在2012-2020年期间经历了与OHCA护理相关的若干发展。OHCAR数据提供了一种探索OHCA发病率、护理和结果随时间变化趋势的方法。它还提供了一种探索系统开发是否与关键结果的变化相关联的方法。本研究旨在总结2012 - 2020年期间可获得的OHCAR数据的关键趋势,探索和建模旁观者心肺复苏术、旁观者除颤和生存率的预测因素,并探索重大系统水平时间发展与这些结果改善相关的假设。以下方案阐述了观察性研究的相关背景和研究方法,以实现上述目标。将使用描述性摘要和图形显示来描述和评估现有OHCAR数据(2012 - 2020年)的主要趋势。将使用多变量逻辑回归对“旁观者心肺复苏术”、“旁观者除颤”和“存活至出院”的预测因子进行建模,并探讨2015/2016年系统层面的发展和2019冠状病毒病大流行(2020年)对这些结果的影响(如果有的话)。本研究的结果将用于了解2012-2020年期间爱尔兰OHCA护理过程和结果的时间趋势。研究结果可以进一步用于优化爱尔兰和国际上OHCA未来的卫生系统发展。
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引用次数: 0
Outcomes of out-of-hospital cardiac arrest in Ireland 2012-2020: Protocol for an observational study. 2012-2020年爱尔兰院外心脏骤停的结果:一项观察性研究的方案。
Pub Date : 2023-10-31 eCollection Date: 2023-01-01 DOI: 10.12688/hrbopenres.13699.1
Tomás Barry, Alice Kasemiire, Martin Quinn, Conor Deasy, Gerard Bury, Siobhan Masterson, Ricardo Segurado, Andrew Murphy

Background: Out-of-hospital cardiac arrest (OHCA) is a leading cause of preventable mortality that now affects almost 3,000 people each year in Ireland. Survival is low at 6-7%, compared to a European average of 8%. The Irish Out-of-Hospital Cardiac Registry (OHCAR) prospectively gathers data on all OHCA in Ireland where emergency medical services attempted resuscitation.The Irish health system has undergone several developments that are relevant to OHCA care in the period 2012-2020. OHCAR data provides a means of exploring temporal trends in OHCA incidence, care, and outcomes over time. It also provides a means of exploring whether system developments were associated with a change in key outcomes.This research aims to summarise key trends in available OHCAR data from the period 2012 - 2020, to explore and model predictors of bystander CPR, bystander defibrillation, and survival, and to explore the hypothesis that significant system level temporal developments were associated with improvements in these outcomes.

Methods: The following protocol sets out the relevant background and research approach for an observational study that will address the above aims. Key trends in available OHCAR data (2012 - 2020) will be described and evaluated using descriptive summaries and graphical displays. Multivariable logistic regression will be used to model predictors of 'bystander CPR', 'bystander defibrillation' and 'survival to hospital discharge' and to explore the effects (if any) of system level developments in 2015/2016 and the COVID-19 pandemic (2020) on these outcomes.

Discussion: The findings of this research will be used to understand temporal trends in the care processes and outcomes for OHCA in Ireland over the period 2012-2020. The results can further be used to optimise future health system developments for OHCA in both Ireland and internationally.

背景:院外心脏骤停(OHCA)是可预防死亡的主要原因,目前爱尔兰每年有近3000人死亡。存活率低至6-7%,而欧洲的平均水平为8%。爱尔兰院外心脏登记处(OHCAR)前瞻性地收集了爱尔兰所有紧急医疗服务尝试复苏的OHCA的数据。在2012-2020年期间,爱尔兰卫生系统经历了与OHCA护理相关的几项发展。OHCAR数据提供了一种探索OHCA发病率、护理和结果随时间变化的时间趋势的方法。它还提供了一种探索系统发展是否与关键结果的变化有关的手段。本研究旨在总结2012-2012年期间可用OHCAR数据的关键趋势,探索旁观者心肺复苏、旁观者除颤和存活率的预测因素并建立模型,并探索显著的系统级时间发展与这些结果的改善相关的假设。方法:以下方案列出了一项观察性研究的相关背景和研究方法,该研究将解决上述目标。将使用描述性摘要和图形显示来描述和评估现有OHCAR数据(2012-2012年)的主要趋势。将使用多变量逻辑回归对“旁观者CPR”、“旁观者除颤”和“出院存活率”的预测因素进行建模,并探讨2015/2016年和新冠肺炎大流行(2020年)系统级发展对这些结果的影响(如果有)。讨论:这项研究的结果将用于了解2012-2020年期间爱尔兰OHCA护理过程和结果的时间趋势。研究结果可进一步用于优化OHCA在爱尔兰和国际上未来的卫生系统发展。
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引用次数: 0
Interventions to support adolescents and young adults with the healthcare transition from paediatric to adult nephrology health services: A scoping review protocol 干预措施,以支持青少年和年轻人的医疗保健过渡从儿科到成人肾健康服务:范围审查协议
Pub Date : 2023-10-30 DOI: 10.12688/hrbopenres.13684.3
Melissa Kinch, Thilo Kroll, Diarmuid Stokes, Suja Somanadhan
Background Due to technological advancements and improved medical management of adolescents and young adults (AYAs) living with renal disease, there has been an exponential increase noted in the number of patients advancing from the paediatric to the adult nephrology healthcare setting. Subsequently, more AYAs are required to undergo the process of healthcare transition from paediatric to adult healthcare services. This process can be challenging period for young people and families and is often associated with a decline in physical and psychosocial health outcomes of AYAs with renal disorders. To ensure a successful transition, AYAs must develop the ability to manage their renal condition, including the medical and psychosocial aspects of their condition, independently. Despite significant research into the transition from paediatric to adult healthcare for this unique patient cohort, the transition period remains a challenge at times. This scoping review aims to map, explore, and understand the interventions that are currently available to offer positive perceptions and experiences of transition for both AYAs living with renal disorders and their families. Methods A systematic literature search will be conducted of PubMed, PsycInfo, CINAHL, ASSIA, EMBASE and Web of Science databases from the year 2000 to present. Two independent reviewers will screen the peer-reviewed literature obtained and assess them against the inclusion criteria to determine their inclusion eligibility. Data will be extracted and synthesised using a template refined by the authors. The scoping review will be undertaken in accordance with PRISMA-ScR guidelines. Data will undergo a formal critical appraisal using recognised appraisal tools. Conclusions Through mapping this knowledge, the scoping review will aim to identify interventions that are currently available and identify gaps within the literature. This evidence may support the development of transitional care interventions in the future, promote patient satisfaction, and improve patient outcome measures and experiences.
背景:由于技术的进步和对患有肾脏疾病的青少年和青壮年(AYAs)的医疗管理的改善,从儿科到成人肾病保健机构的患者数量呈指数级增长。随后,需要更多的aya经历从儿科到成人保健服务的保健过渡过程。这一过程对年轻人和家庭来说可能是一个具有挑战性的时期,并且往往与患有肾病的青少年的身体和心理健康结果下降有关。为了确保成功过渡,辅助护士必须培养独立管理其肾脏状况的能力,包括其状况的医疗和社会心理方面。尽管对这一独特患者群体从儿科向成人医疗保健过渡进行了大量研究,但过渡时期有时仍然是一个挑战。本综述旨在绘制、探索和理解目前可用的干预措施,为患有肾脏疾病的aya及其家庭提供积极的认知和转变经验。方法系统检索2000年至今的PubMed、PsycInfo、CINAHL、ASSIA、EMBASE和Web of Science数据库。两名独立的审稿人将对获得的同行评审文献进行筛选,并根据纳入标准对其进行评估,以确定其纳入资格。数据将被提取和综合使用由作者提炼的模板。范围审查将按照PRISMA-ScR指南进行。数据将使用公认的评估工具进行正式的批判性评估。通过绘制这些知识,范围审查将旨在确定目前可用的干预措施,并确定文献中的空白。这一证据可能支持未来过渡性护理干预措施的发展,提高患者满意度,改善患者的结果测量和体验。
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引用次数: 0
Interventions to support adolescents and young adults with the healthcare transition from paediatric to adult nephrology health services: A scoping review protocol. 支持青少年和年轻人从儿科健康服务向成人肾脏病健康服务过渡的干预措施:范围界定审查协议。
Pub Date : 2023-10-30 eCollection Date: 2023-01-01 DOI: 10.12688/hrbopenres.13684.2
Melissa Kinch, Thilo Kroll, Diarmuid Stokes, Suja Somanadhan

Background: Due to technological advancements and improved medical management of adolescents and young adults (AYAs) living with renal disease, there has been an exponential increase noted in the number of patients advancing from the paediatric to the adult nephrology healthcare setting. Subsequently, more AYAs are required to undergo the process of healthcare transition from paediatric to adult healthcare services. This process can be a challenging period for young people and families and is often associated with a decline in physical and psychosocial health outcomes of AYAs with renal disorders. To ensure a successful transition, AYAs must develop the ability to manage their renal condition, including the medical and psychosocial aspects of their condition, independently. Despite significant research into the transition from paediatric to adult healthcare for this unique patient cohort, the transition period remains a challenge at times. This scoping review aims to map, explore, and understand the interventions that are currently available to offer positive perceptions and experiences of transition for both AYAs living with renal disorders and their families.

Methods: A systematic literature search will be conducted of PubMed, PsycInfo, CINAHL, ASSIA, EMBASE and Web of Science databases from the year 2000 to present. Two independent reviewers will screen the peer-reviewed literature obtained and assess them against the inclusion criteria to determine their inclusion eligibility. Data will be extracted and synthesised using a template refined by the authors. The scoping review will be undertaken in accordance with PRISMA-ScR guidelines. Data will undergo a formal critical appraisal using recognised appraisal tools.

Conclusions: Through mapping this knowledge, the scoping review will aim to identify interventions that are currently available and identify gaps within the literature. This evidence may support the development of transitional care interventions in the future, promote patient satisfaction, and improve patient outcome measures and experiences.

背景:由于技术进步和对患有肾脏疾病的青少年和年轻人(AYAs)的医疗管理的改善,从儿科到成人肾脏病医疗机构的患者数量呈指数级增长。随后,更多的AYA需要经历从儿科到成人医疗服务的医疗保健过渡过程。这一过程对年轻人和家庭来说可能是一个具有挑战性的时期,通常与患有肾脏疾病的AYA的身体和心理健康结果下降有关。为了确保成功过渡,AYA必须培养独立管理其肾脏状况的能力,包括其状况的医疗和心理社会方面。尽管对这一独特患者群体从儿科向成人医疗的过渡进行了大量研究,但过渡期有时仍然是一个挑战。这项范围界定审查旨在绘制、探索和了解目前可用的干预措施,为患有肾脏疾病的AYA及其家人提供积极的转变观念和体验。方法:对2000年至今PubMed、PsycInfo、CINAHL、ASSIA、EMBASE和Web of Science数据库进行系统的文献检索。两名独立评审员将对获得的同行评审文献进行筛选,并根据纳入标准对其进行评估,以确定其入选资格。数据将使用作者提炼的模板进行提取和合成。范围审查将根据PRISMA ScR指南进行。数据将使用公认的评估工具进行正式的批判性评估。结论:通过绘制这些知识,范围界定审查将旨在确定目前可用的干预措施,并确定文献中的差距。这些证据可能支持未来过渡期护理干预措施的发展,提高患者满意度,并改善患者的结果测量和体验。
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引用次数: 0
The impact of telemedicine enabled pre-hospital triage in acute stroke - a protocol for a mixed methods systematic review. 远程医疗对急性中风院前分诊的影响——一项混合方法系统评价的协议。
Pub Date : 2023-10-30 eCollection Date: 2022-01-01 DOI: 10.12688/hrbopenres.13514.2
Deirdre McCartan, Stuart Lee, Jorin Bejleri, Paul Murphy, Anne Hickey, David Williams

Introduction: Increasing access to thrombolysis and thrombectomy through improved pathway organisation remains a health service challenge that requires contextualisation to the geographic, demographic and resourcing status of any regional stroke service. Pre-hospital delays or delays during inter-hospital transfers can result in patients being outside the window for one or both interventions. Pre-hospital triage using technology-enabled interdisciplinary communication networks may facilitate rapid individualized care decisions, permitting streamlined care pathways to hospital sites most appropriate to their clinical presentation and history in the first instance. Understanding the experience of those involved in efforts to improve or reorganise care may help to explain the impact observed.

Objectives: 1. To review the impact of pre-hospital telemedicine enabled workflow intervention strategies on patient outcomes and on service process metrics in hyper-acute stroke care2. To examine how the experience of those involved in providing or receiving such interventions might identify key characteristics of effective interventions.

Inclusion criteria: Quantitative, qualitative and primary mixed methods studies will be included. Quantitative studies will assess effectiveness of telemedicine-enabled interventions that facilitate pre-hospital acute stroke triage. Intervention effects on functional outcomes of patients, on intervention rates and on key time metrics in hyperacute stroke care will be assessed. Qualitative studies will explore the experiences of people involved in or impacted by these interventions.

Methods and analysis: A convergent segregated mixed methods systematic review will synthesise and integrate primary qualitative, quantitative and mixed methods studies using the Joanna Briggs Institute methodology. Database searches will include OVID (MEDLINE), EMBASE, The Cochrane Library, CINAHL and Web of Science. Critical appraisal will include the Mixed Methods Assessment Tool. Results of quantitative studies and findings of qualitative studies will be integrated and configured to explore and contextualize each single method synthesis.

Systematic review registration: This protocol has been submitted for registration with PROSPERO.

导言:通过改进通路组织来增加溶栓和取栓的可及性仍然是一项卫生服务挑战,需要将任何区域卒中服务的地理、人口和资源状况进行背景化。院前延误或医院间转院期间的延误可能导致患者无法接受一种或两种干预措施。院前分诊使用技术支持的跨学科通信网络可以促进快速的个性化护理决策,允许简化的护理路径到最适合其临床表现和病史的医院地点。了解那些参与改善或重组护理工作的人的经历,可能有助于解释所观察到的影响。目的:1。回顾院前远程医疗支持的工作流程干预策略对超急性卒中护理患者预后和服务流程指标的影响2。研究那些参与提供或接受此类干预措施的人的经验如何确定有效干预措施的关键特征。纳入标准:将包括定量、定性和初级混合方法研究。定量研究将评估促进院前急性中风分诊的远程医疗干预措施的有效性。将评估干预对患者功能结局、干预率和超急性卒中护理关键时间指标的影响。定性研究将探讨参与这些干预或受这些干预影响的人们的经历。方法和分析:采用乔安娜布里格斯研究所的方法,将综合和整合主要的定性、定量和混合方法研究。数据库检索将包括OVID (MEDLINE)、EMBASE、The Cochrane Library、CINAHL和Web of Science。批判性评估将包括混合方法评估工具。定量研究的结果和定性研究的结果将被整合和配置,以探索和背景每一个单一的方法综合。系统评价注册:本方案已提交PROSPERO注册。
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引用次数: 0
Perspectives and factors associated with informal human milk sharing: a mixed-methods systematic review protocol 与非正式母乳共享相关的观点和因素:一种混合方法的系统评价方案
Pub Date : 2023-10-25 DOI: 10.12688/hrbopenres.13718.2
Niamh Vickers, Anne Matthews, Gillian Paul
Background The practice of informal human milk sharing is a relatively new phenomenon and poses significant questions in the domain of infant feeding. Informal human milk sharing is a means of donating human milk from another lactating individual who is not the child’s biological parent, in a casual manner, that is, without the involvement of health professionals or agencies. The advent of digital technology has facilitated the donation and receipt of human milk through digital online platforms and thus has amplified this modern practice. This research aims to comprehensively examine and synthesize evidence about the motivations, barriers, facilitators and experiences of individuals who both donate (donors) and the primary care givers of the infants who receive (recipients) human milk informally to provide to infants. Methods A mixed-methods systematic review will be undertaken. This review will consider qualitative, quantitative and primary mixed-methods studies which report on the factors associated with informal milk sharing, and on donors’ and recipients’ experiences of the practice. Primary mixed-method studies will be included if the individual qualitative and quantitative components can be extracted. Five databases will be searched for studies on informal human milk sharing published from inception of the database. Study quality will be evaluated using the standardized JBI critical appraisal tools, selected based on the methodology in each individual study. Data extraction will be conducted using the JBI mixed methods data extraction form followed by data transformation, synthesis and integration. This mixed-methods systematic review will follow a convergent integrated approach in accordance with JBI guidance. Discussion Informal human milk sharing is a novel practice in the domain of infant feeding. This review will enable a thorough understanding of this practice from both the donors and recipients’ perspective and will have implications for healthcare professionals, policy and future clinical decision-making. Protocol registration number PROSPERO CRD42023405653
非正式母乳共享的做法是一个相对较新的现象,在婴儿喂养领域提出了重大问题。非正式母乳共享是指在没有卫生专业人员或机构参与的情况下,以一种随意的方式,从非儿童亲生父母的另一个哺乳期个体中捐赠母乳的一种手段。数字技术的出现促进了通过数字在线平台捐赠和接收母乳,从而扩大了这一现代做法。本研究旨在全面检查和综合有关个人的动机、障碍、促进因素和经验的证据,这些个人既捐赠(捐赠者),也接受(接受者)婴儿的初级保健提供者非正式地提供母乳给婴儿。方法采用混合方法进行系统评价。本次审查将考虑定性、定量和初级混合方法研究,这些研究报告了与非正式母乳分享有关的因素,以及捐助者和受助者的实践经验。如果能够提取出单个定性和定量成分,将纳入初级混合方法研究。将在5个数据库中检索自数据库建立以来发表的关于非正式母乳共享的研究。研究质量将使用标准化的JBI关键评估工具进行评估,这些工具是根据每个单独研究的方法选择的。数据提取将采用JBI混合方法进行数据提取,然后进行数据转换、综合和集成。这种混合方法的系统评价将遵循按照JBI指南的收敛综合方法。非正式的母乳共享是婴儿喂养领域的一种新做法。这篇综述将从供体和受者的角度全面了解这种做法,并将对医疗保健专业人员、政策和未来的临床决策产生影响。协议注册号PROSPERO CRD42023405653
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