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Creating connections: developing an online space for cross-regional mentorship and network building in the dementia research field. 建立联系:为痴呆症研究领域的跨区域指导和网络建设开发一个在线空间。
Pub Date : 2023-03-23 DOI: 10.12688/amrcopenres.13091.2
Josie Fullerton, Conceicao Bettencourt, Michael Daniels, Fiona Mclean, Susan Simpson, Adam Smith, Nathan Woodling, Fiona Kerr

Background: Effective development and retention of talented early-career researchers (ECRs) is essential to the continued success of biomedical science research fields. To this end, formal mentorship programmes (where researchers are paired with one or more mentors beyond their direct manager) have proven to be successful in providing support and expanding career development opportunities. However, many programmes are limited to pools of mentors and mentees within one institute or geographical area, highlighting that cross-regional connections may be a missed opportunity in many mentorship schemes.

Methods: Here, we aimed to address this limitation through our pilot cross-regional mentorship scheme, creating reciprocal mentor-mentee pairings between two pre-established networks of Alzheimer's Research UK (ARUK) Network-associated researchers. We carefully created 21 mentor-mentee pairings between the Scotland and University College London (UCL) networks in 2021, with surveys conducted to assess mentor/mentee satisfaction with the programme.

Results: Participants reported very high satisfaction with the nature of the pairings and the mentors' contribution to the career development of mentees; a majority also reported that the mentorship scheme increased their connections outside of their home network. Our assessment of this pilot programme is that it supports the utility of cross-regional mentorship schemes for ECR development. At the same time, we highlight the limitations of our programme and recommend areas for improvement in future programmes, including greater consideration of support for minoritized groups and the need for additional training for mentors.

Conclusions: In conclusion, our pilot scheme generated successful and novel mentor-mentee pairings across pre-existing networks; both of which reported high satisfaction with pairings, ECR career and personal development, and the formation of new cross-network connections. This pilot may serve as a model for other networks of biomedical researchers, where existing networks within medical research charities can act as a scaffold to build new cross-regional career development opportunities for researchers.

背景:有效发展和留住有才华的早期职业研究人员(ecr)是生物医学科学研究领域持续成功的关键。为此,正式的指导计划(研究人员与一个或多个导师配对,而不是直接主管)已被证明在提供支持和扩大职业发展机会方面取得了成功。然而,许多项目仅限于一个研究所或地理区域内的导师和学员,这突出表明,在许多导师计划中,跨区域联系可能是一个错失的机会。方法:在这里,我们的目标是通过我们的试点跨区域指导计划来解决这一限制,在两个预先建立的阿尔茨海默病研究英国(ARUK)网络相关研究人员网络之间建立互惠的导师-被指导者配对。2021年,我们在苏格兰和伦敦大学学院(UCL)网络之间精心创建了21对师徒配对,并进行了调查,以评估师徒对该计划的满意度。结果:参与者对师徒结对的性质和导师对其职业发展的贡献表现出很高的满意度;大多数人还报告说,师徒计划增加了他们在家庭网络之外的联系。我们对这一试点项目的评估是,它支持跨区域指导计划在ECR发展中的效用。与此同时,我们强调我们方案的局限性,并建议在今后的方案中改进的领域,包括更多地考虑对少数群体的支持和对导师进行额外培训的需要。结论:总之,我们的试点计划在已有的网络中产生了成功的、新颖的师徒配对;他们都对伴侣关系、ECR职业和个人发展以及新的跨网络联系的形成表示高度满意。这一试点可以作为其他生物医学研究人员网络的一个模式,在这些网络中,医学研究慈善机构内部的现有网络可以作为一个框架,为研究人员建立新的跨区域职业发展机会。
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引用次数: 0
Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis [version 2; peer review: 2 approved]. 将姑息关怀和生命末期关怀纳入以综合关怀为目标的医疗战略:文献分析[第 2 版;同行评审:2 人通过]。
Pub Date : 2023-01-10 DOI: 10.12688/amrcopenres.13079.2
Rachel L Chambers, Sophie Pask, Irene J Higginson, Stephen Barclay, Fliss E M Murtagh, Katherine E Sleeman

Background: In England, Integrated Care Systems have been established to improve integration of care, as part of the NHS Long Term Plan. For people near the end of life, palliative care can improve integration of care. We aimed to understand whether and how palliative and end of life care was included in Integrated Care System strategies, and to consider priorities for strengthening this.

Methods: Documentary analysis of Integrated Care System (ICS) strategies, using summative content analysis, was performed. Google searches were used to identify NHS Trust, Clinical Commissioning Group or ICS websites. We searched these websites to identify strategies. Key terms were used to identify relevant content. Themes were mapped onto an adapted logic model for integrated care.

Results: 23 Integrated Care System strategy documents were identified. Of these, two did not mention any of the key terms, and six highlighted palliative and end of life care as either a priority, area of focus, or an ambition. While most (19/23) strategies included elements that could be mapped onto the adapted logic model for integrated care, the thread from enablers and components, to structures, processes, outcomes, and impact was incomplete.

Conclusions: Greater prioritisation of palliative and end of life care within recently established Integrated Care Systems could improve outcomes for people near the end of life, as well as reduce reliance on acute hospital care. Integrated Care Systems should consider involving patients, the public and palliative care stakeholders in the ongoing development of strategies. For strategies to be effective, our adapted logic model can be used to outline how different components of care fit together to achieve defined outcomes and impact.

背景:作为英国国家医疗服务体系(NHS)长期计划的一部分,英国已经建立了综合医疗系统来改善医疗服务的整合。对于生命即将结束的人来说,姑息关怀可以改善整合护理。我们旨在了解姑息关怀和生命末期关怀是否以及如何被纳入综合护理系统战略,并考虑加强这一战略的优先事项:方法:采用总结性内容分析法对整合护理系统(ICS)战略进行文献分析。我们使用谷歌搜索来确定 NHS 信托公司、临床委托小组或 ICS 网站。我们对这些网站进行了搜索,以确定战略。使用关键术语识别相关内容。结果:我们确定了 23 份综合护理系统战略文件。其中,两份未提及任何关键术语,六份强调姑息关怀和生命末期关怀是优先事项、重点领域或目标。虽然大多数(19/23)战略都包含了可映射到经调整的综合关怀逻辑模型中的要素,但从推动因素和组成部分到结构、流程、结果和影响的线索并不完整:结论:在近期建立的综合医疗系统中,进一步优先考虑姑息治疗和生命末期关怀,可以改善生命末期患者的治疗效果,并减少对急症医院护理的依赖。综合医疗系统应考虑让患者、公众和姑息关怀的利益相关者参与到战略的持续发展中来。为了使策略有效,我们可以使用经过改编的逻辑模型来概述不同的关怀内容如何相互配合,以实现确定的结果和影响。
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引用次数: 0
The impact of Covid-19 pandemic on hospices: A systematic integrated review and synthesis of recommendations for policy and practice. 2019冠状病毒病大流行对临终关怀的影响:政策和实践建议的系统综合审查和综合
Pub Date : 2022-10-26 eCollection Date: 2022-01-01 DOI: 10.12688/amrcopenres.13105.1
Shalene van Langen-Datta, Helen Wesson, Joanna Fleming, Abi Eccles, Catherine Grimley, Jeremy Dale, Kathryn Almack, Catriona Mayland, Sarah Mitchell, Ruth Driscoll, Lynn Tatnell, Lesley Roberts, John I MacArtney

Background: The Covid-19 pandemic resulted in the development of numerous recommendations for practice and policy for specialist palliative care provided by hospices in United Kingdom (UK), as hospices were significantly affected by the pandemic and protections put in place.The aim of this review is to identify and synthesise recommendations or implications for policy and practice that have been generated for adult hospice specialist palliative care during the first 24 months of the Covid-19 pandemic.

Methods: AMED, BNI, CINAHL, EMBASE, EMCARE, HMIC, Medline, PsycINFO, PubMed databases were searched for peer-reviewed papers, as well as hand searchers for grey literature. Literature relating to hospices and Covid-19 in the UK were included and a thematic synthesis of recommendations for hospice policy and practice was undertaken.

Results: 858 articles were identified with 12 meeting the inclusion criteria. Fifty-eight recommendations or implications were identified: 31 for policy, 27 for practice, and 10 covering both. Recommendations were organised under ten themes. There were several recommendations seeking to secure hospice resources to mitigate the short-term impact of the pandemic, as well as those focused on longer-term implications such as core funding. The impact of the pandemic on the quality of hospice care was the focus for numerous recommendations around improving integration of hospice care in the community, provision of bereavement support and better use of Advance Care Plans (ACP). However, there were significant gaps related to carer visitation in hospices, inequities of palliative care, or hospice-at-home services.

Conclusion: The Covid-19 pandemic and protections exposed several ongoing policy and practice needs, especially around hospice resources, while generating novel issues for hospices to address. Significant policy gaps remain to be addressed to mitigate the impact of the pandemic on the quality of hospice specialist palliative care.

背景:2019冠状病毒病大流行导致制定了许多关于英国临终关怀医院提供专科姑息治疗的实践和政策建议,因为临终关怀医院受到大流行的严重影响,并实施了保护措施。本综述的目的是确定和综合在Covid-19大流行的头24个月期间为成人临终关怀专家姑息治疗产生的政策和实践建议或影响。方法:检索AMED、BNI、CINAHL、EMBASE、EMCARE、HMIC、Medline、PsycINFO、PubMed等数据库的同行评议论文,手工检索灰色文献。纳入了与英国临终关怀和Covid-19相关的文献,并对临终关怀政策和实践的建议进行了专题综合。结果:共筛选出858篇文献,其中12篇符合纳入标准。确定了58项建议或影响:31项针对政策,27项针对实践,10项涵盖两者。建议分为十个主题。有几项建议寻求获得临终关怀资源,以减轻大流行病的短期影响,以及侧重于核心资金等长期影响的建议。大流行对临终关怀质量的影响是围绕改善社区临终关怀整合、提供丧亲支持和更好地利用预先护理计划(ACP)的许多建议的重点。然而,在安宁疗护的照护者探视、缓和疗护的不公平或居家安宁疗护服务方面,存在显著的差距。结论:2019冠状病毒病大流行和防护暴露了一些持续的政策和实践需求,特别是在临终关怀资源方面,同时也为临终关怀带来了新的问题。为减轻大流行病对临终关怀专家姑息治疗质量的影响,仍需解决重大的政策空白。
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引用次数: 0
Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis [version 2; peer review: 2 approved] 将姑息治疗和临终关怀纳入旨在综合护理的卫生战略:文献分析[第2版;同行评议:2人通过
Pub Date : 2022-08-25 DOI: 10.12688/amrcopenres.13079.1
R. Chambers, S. Pask, Irene J. Higginson, S. Barclay, F. Murtagh, K. Sleeman
Background In England, Integrated Care Systems have been established to improve integration of care, as part of the NHS Long Term Plan. For people near the end of life, palliative care can improve integration of care. We aimed to understand whether and how palliative and end of life care was included in Integrated Care System strategies, and to consider priorities for strengthening this. Methods Documentary analysis of Integrated Care System (ICS) strategies, using summative content analysis, was performed. Google searches were used to identify NHS Trust, Clinical Commissioning Group or ICS websites. We searched these websites to identify strategies. Key terms were used to identify relevant content. Themes were mapped onto an adapted logic model for integrated care. Results 23 Integrated Care System strategy documents were identified. Of these, two did not mention any of the key terms, and six highlighted palliative and end of life care as either a priority, area of focus, or an ambition. While most (19/23) strategies included elements that could be mapped onto the adapted logic model for integrated care, the thread from enablers and components, to structures, processes, outcomes, and impact was incomplete. Conclusions Greater prioritisation of palliative and end of life care within recently established Integrated Care Systems could improve outcomes for people near the end of life, as well as reduce reliance on acute hospital care. Integrated Care Systems should consider involving patients, the public and palliative care stakeholders in the ongoing development of strategies. For strategies to be effective, our adapted logic model can be used to outline how different components of care fit together to achieve defined outcomes and impact.
背景在英格兰,作为NHS长期计划的一部分,已经建立了综合护理系统来改善护理的整合。对于生命即将结束的人来说,姑息治疗可以改善护理的一体化。我们旨在了解姑息治疗和临终关怀是否以及如何被纳入综合护理系统战略,并考虑加强这一战略的优先事项。方法采用总结性内容分析法对综合护理系统(ICS)策略进行文献分析。谷歌搜索被用来识别NHS信托、临床调试小组或ICS网站。我们搜索了这些网站以确定策略。关键术语用于确定相关内容。主题被映射到一个适用于综合护理的逻辑模型上。结果确定了23份综合护理系统战略文件。其中两个没有提到任何关键术语,六个强调姑息治疗和临终关怀是一个优先事项、重点领域或雄心。虽然大多数(19/23)策略都包括可以映射到综合护理的调整逻辑模型上的元素,但从推动者和组成部分到结构、过程、结果和影响的线索是不完整的。结论在最近建立的综合护理系统中,更优先地考虑姑息治疗和临终关怀,可以改善接近临终的人的预后,并减少对急性医院护理的依赖。综合护理系统应考虑让患者、公众和姑息治疗利益相关者参与正在进行的战略制定。为了使策略有效,我们经过调整的逻辑模型可以用来概述护理的不同组成部分如何结合在一起,以实现既定的结果和影响。
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引用次数: 0
The dementia research career pipeline: Gender disparities in publication authorships and grant funding outcomes at different career stages. 痴呆症研究的职业管道:不同职业阶段发表论文作者和资助结果的性别差异
Pub Date : 2022-08-10 eCollection Date: 2022-01-01 DOI: 10.12688/amrcopenres.13072.1
Melina Andreou, Narshil Choi, Jorge Gómez Magenti, Susan Kohlhaas, Rosa Sancho

Background: Multiple studies have analysed gender disparities in academic research. Here we study the gender composition of the dementia research field at different stages in the career pipeline.

Methods: We use various data sources to gain insights about the gender ratio across career stages: conference attendance data as a proxy for the field as a whole; bibliometric data to know who publishes, and who occupies positions of seniority among the listed authors; and Alzheimer's Research UK's (ARUK) internal grant funding data to understand who obtains funding. We also analyse the scoring of grant applications based on the gender of the reviewers.

Results: Our results confirm that female researchers leave dementia academic research at higher rates than men, before transitioning into senior positions. In 2020, they comprised over 60% of the field, produced 54% of first authorships, but only accounted for 38% of last authorships. Overall, women received 37% of ARUK's competitive grants, with significant differences between grant schemes awarded for early career researchers (64% female awardees) compared to grant schemes aimed at senior researchers (33% female awardees). Men and women applied for and obtained grants at significantly different rates depending on the career stage at which the grant was aimed.Finally, we also observed that male and female reviewers apply evaluation criteria differently, with men giving better scores than women on average.

Conclusions: Our study adds to the evidence that shows that women get published less, receive less funding, and transition into senior academic positions at disproportionally lower rates than men do. We briefly discuss potential reasons why gender disparities arise as researchers progress into senior positions, and offer interventions ARUK can implement in its application and evaluation process to address those disparities.

背景:多项研究分析了学术研究中的性别差异。在这里,我们研究了痴呆症研究领域在职业生涯不同阶段的性别构成。方法:我们使用各种数据来源来深入了解不同职业阶段的性别比例:会议出席率数据作为整个领域的代表;文献计量数据,以了解谁发表,谁在列出的作者中占据的地位;以及英国阿尔茨海默病研究中心(ARUK)的内部资助数据,以了解谁获得了资助。我们还分析了基于审稿人性别的拨款申请评分。结果:我们的研究结果证实,在进入高级职位之前,女性研究人员离开痴呆症学术研究的比例高于男性。到2020年,他们占该领域的60%以上,占第一作者的54%,但只占最后作者的38%。总体而言,女性获得了ARUK竞争性赠款的37%,与针对高级研究人员的赠款计划(33%女性获奖者)相比,授予早期职业研究人员的赠款计划(64%女性获奖者)存在显著差异。根据赠款所针对的职业阶段,男女申请和获得赠款的比率差别很大。最后,我们还观察到,男性和女性审稿人使用的评估标准不同,男性的平均得分高于女性。结论:我们的研究增加了证据,表明女性发表的论文较少,获得的资助较少,晋升高级学术职位的比例比男性低得多。我们简要讨论了研究人员晋升到高级职位时出现性别差异的潜在原因,并提供了ARUK可以在其应用和评估过程中实施的干预措施,以解决这些差异。
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引用次数: 0
Research Evaluating Staff Training Online for Resilience (RESTORE):  Protocol for a single-arm feasibility study of an online Acceptance and Commitment Therapy intervention to improve staff wellbeing in palliative care settings. 工作人员在线复原力培训研究评估(RESTORE): 接受与承诺疗法在线干预的单臂可行性研究方案,旨在改善姑息关怀机构工作人员的健康状况。
Pub Date : 2022-06-22 eCollection Date: 2021-01-01 DOI: 10.12688/amrcopenres.13035.2
Anne Finucane, Nicholas J Hulbert-Williams, Brooke Swash, Juliet A Spiller, Brigid Lydon, David Gillanders

Background: Palliative care staff commonly experience workplace stress and distress. General stressors include unmanageable workloads and staff shortages. Stressors specific to palliative care include regular exposure to death, loss and grief. The COVID-19 pandemic exacerbated exhaustion and burnout across the healthcare system, including for those providing palliative care. Evidence based psychological support interventions, tailored to the needs and context of palliative care staff, are needed. Acceptance and Commitment Therapy (ACT) is an established form of cognitive behavioural therapy which uses behavioural psychology, values, acceptance, and mindfulness techniques to improve mental health and wellbeing. ACT is effective in improving workplace wellbeing in many occupational settings. Our study examines the acceptability and feasibility of an online ACT-based intervention to improve mental health and wellbeing in staff caring for people with an advanced progressive illness.

Methods: We plan a single-arm feasibility trial. We will seek to recruit 30 participants to take part in an 8- week online ACT-based intervention, consisting of three synchronous facilitated group sessions and five asynchronous self-directed learning modules. We will use convergent mixed methods to evaluate the feasibility of the intervention. Quantitative feasibility outcomes will include participant recruitment and retention rates, alongside completion rates of measures assessing stress, quality of life, wellbeing, and psychological flexibility. Focus groups and interviews will explore participant perspectives on the intervention. We will run a stakeholder workshop to further refine the intervention and identify outcomes for use in a future evaluation.

Results: We will describe participant perspectives on intervention acceptability, format, content, and perceived impact, alongside rates of intervention recruitment, retention, and outcome measure completion.

Conclusion: We will show whether a brief, online ACT intervention is acceptable to, and feasible for palliative care staff. Findings will be used to further refine the intervention and provide essential information on outcome assessment prior to a full-scale evaluation.

背景:姑息关怀工作人员通常会经历工作场所的压力和困扰。一般的压力包括无法管理的工作量和人员短缺。姑息关怀特有的压力包括经常面临死亡、损失和悲伤。COVID-19大流行加剧了整个医疗系统的疲惫和职业倦怠,包括那些提供姑息关怀的人员。我们需要根据姑息关怀工作人员的需求和具体情况,采取有实证依据的心理支持干预措施。接纳与承诺疗法(ACT)是一种成熟的认知行为疗法,它利用行为心理学、价值观、接纳和正念技术来改善心理健康和幸福感。在许多职业环境中,ACT 能有效改善工作场所的健康状况。我们的研究考察了基于在线 ACT 干预的可接受性和可行性,以改善护理晚期进展性疾病患者的工作人员的心理健康和幸福感:我们计划开展一项单臂可行性试验。我们将招募 30 名参与者,参加为期 8 周的基于 ACT 的在线干预,其中包括 3 次同步促进小组会议和 5 个异步自主学习模块。我们将采用聚合混合方法来评估干预的可行性。定量可行性结果将包括参与者招募率和保留率,以及压力、生活质量、幸福感和心理灵活性评估指标的完成率。焦点小组和访谈将探讨参与者对干预措施的看法。我们将举办一次利益相关者研讨会,进一步完善干预措施,并确定用于未来评估的结果:结果:我们将描述参与者对干预的可接受性、形式、内容和感知影响的看法,以及干预的招募率、保留率和结果测量的完成率:我们将说明姑息关怀工作人员是否可以接受简短的在线 ACT 干预,以及这种干预是否可行。研究结果将用于进一步完善干预措施,并为全面评估前的结果评估提供重要信息。
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引用次数: 0
A feasibility pilot study of the effects of neurostimulation on swallowing function in Parkinson's Disease [version 2; peer review: 1 approved, 3 approved with reservations, 1 not approved]. 神经刺激对帕金森病患者吞咽功能影响的可行性试验研究[第 2 版;同行评审:1项通过,3项有保留意见通过,1项未通过]。
Pub Date : 2022-04-08 DOI: 10.12688/amrcopenres.13007.2
Ayodele Sasegbon, Ulrike Hammerbeck, Emilia Michou, Ivy Cheng, Mengqing Zhang, Charlotte James, Shaheen Hamdy

Introduction: Dysphagia often occurs during Parkinson's disease (PD) and can have severe consequences. Recently, neuromodulatory techniques have been used to treat neurogenic dysphagia. Here we aimed to compare the neurophysiological and swallowing effects of three different types of neurostimulation, 5 Hertz (Hz) repetitive transcranial magnetic stimulation (rTMS), 1 Hz rTMS and pharyngeal electrical stimulation (PES) in patients with PD.

Method: 12 PD patients with dysphagia were randomised to receive either 5 Hz rTMS, 1 Hz rTMS, or PES. In a cross-over design, patients were assigned to one intervention and received both real and sham stimulation. Patients received a baseline videofluoroscopic (VFS) assessment of their swallowing, enabling penetration aspiration scores (PAS) to be calculated for: thin fluids, paste, solids and cup drinking. Swallowing timing measurements were also performed on thin fluid swallows only. They then had baseline recordings of motor evoked potentials (MEPs) from both pharyngeal and (as a control) abductor pollicis brevis (APB) cortical areas using single-pulse TMS. Subsequently, the intervention was administered and post interventional TMS recordings were taken at 0 and 30 minutes followed by a repeat VFS within 60 minutes of intervention.

Results: All interventions were well tolerated. Due to lower than expected recruitment, statistical analysis of the data was not undertaken. However, with respect to PAS swallowing timings and MEP amplitudes, there was small but visible difference in the outcomes between active and sham.

Conclusion: PES, 5 Hz rTMS and 1 Hz rTMS are tolerable interventions in PD related dysphagia. Due to small patient numbers no definitive conclusions could be drawn from the data with respect to individual interventions improving swallowing function and comparative effectiveness between interventions. Larger future studies are needed to further explore the efficacy of these neuromodulatory treatments in Parkinson's Disease associated dysphagia.

导言:吞咽困难经常发生在帕金森病(PD)期间,并可能造成严重后果。最近,神经调节技术被用于治疗神经源性吞咽困难。在此,我们旨在比较三种不同类型的神经刺激(5 赫兹重复经颅磁刺激(rTMS)、1 赫兹重复经颅磁刺激(rTMS)和咽部电刺激(PES))对帕金森病患者的神经生理学和吞咽效果:12名患有吞咽困难的帕金森病患者被随机分配接受5赫兹经颅磁刺激、1赫兹经颅磁刺激或咽部电刺激。在交叉设计中,患者被分配到一种干预措施中,同时接受真实刺激和假刺激。患者接受视频荧光屏(VFS)对其吞咽情况进行基线评估,从而计算出稀薄液体、糊状物、固体和杯饮的穿透吸入评分(PAS)。此外,还仅对稀薄液体的吞咽进行了吞咽计时测量。然后,使用单脉冲 TMS 对咽部和(作为对照的)外展肌(APB)皮层区域的运动诱发电位(MEPs)进行基线记录。随后进行干预,并在 0 分钟和 30 分钟时进行干预后 TMS 记录,然后在干预后 60 分钟内重复 VFS:所有干预的耐受性都很好。由于招募人数低于预期,因此未对数据进行统计分析。但是,在 PAS 吞咽时间和 MEP 振幅方面,积极干预和假干预的结果差异很小,但很明显:结论:PES、5赫兹经颅磁刺激和1赫兹经颅磁刺激对与帕金森病相关的吞咽困难是可以耐受的干预措施。由于患者人数较少,因此无法从数据中得出个别干预措施是否能改善吞咽功能以及干预措施之间的效果比较的明确结论。今后需要进行更大规模的研究,进一步探讨这些神经调节疗法对帕金森病相关吞咽困难的疗效。
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引用次数: 0
Population attributable risk for colorectal and breast cancer in England, Wales, Scotland, Northern Ireland, and the United Kingdom. 英格兰、威尔士、苏格兰、北爱尔兰和英国的结直肠癌和乳腺癌人口可归因风险。
Pub Date : 2022-03-07 eCollection Date: 2021-01-01 DOI: 10.12688/amrcopenres.12980.2
Shatabdi Goon, Hanseul Kim, Edward L Giovannucci

Background: The population attributable risk (PAR) is a statistic commonly used for quantifying preventability of cancer. We report here PAR estimates for the United Kingdom (UK) along with its constituent countries for up-to-date risk factor-attributable colorectal cancer (CRC) and breast cancer (BC), focusing on diet and nutrition related factors and tobacco (CRC) using representative national surveys.

Methods: The PAR was calculated using established, modifiable risk factors by the World Cancer Research Fund/American Institute of Cancer Research (WCRF/AICR): physical activity, body mass index (BMI), alcoholic drinks, red meat, processed meat, dietary fiber, dietary calcium, as well as cigarette smoking for CRC, and physical activity, BMI, alcoholic drinks, and fruits and vegetable consumption for BC. National prevalence estimates and relative risks (RRs) for CRC and BC were obtained from meta-analyses or large pooled analyses.

Results: Based on eight dietary and lifestyle risk factors, the estimates for attributable cases of CRC for males and females, respectively, were as follows: England: 67% and 60%; Scotland: 68% and 59%, Wales: 66% and 61%; Northern Ireland: 67% and 61%; and UK: 67% and 60%. Excluding smoking, the PAR for the UK was 61% for men and 52% for women. Based on four dietary and lifestyle risk factors, the estimates for BC were as follows: England: 26%, Scotland: 27%; Wales: 25%; Northern Ireland: 26%; and UK: 27%.

Conclusion: Up to 67% for CRC and 27% of BC were attributable to modifiable dietary and lifestyle factors in the UK. Moderate differences in PAR are observed between countries due to different prevalence of exposure to risk factors.

背景:人口可归因风险 (PAR) 是量化癌症可预防性的常用统计方法。我们在此报告英国(UK)及其组成国家利用具有代表性的全国调查对最新的可归因于风险因素的结直肠癌(CRC)和乳腺癌(BC)的人群可归因风险估计值,重点关注与饮食和营养相关的因素以及烟草(CRC):方法:采用世界癌症研究基金会/美国癌症研究所(WCRF/AICR)确定的可改变的风险因素计算 PAR:CRC 的风险因素包括体育锻炼、体重指数 (BMI)、酒精饮料、红肉、加工肉类、膳食纤维、膳食钙以及吸烟;BC 的风险因素包括体育锻炼、体重指数、酒精饮料以及水果和蔬菜摄入量。CRC和BC的全国患病率估计值和相对风险系数(RRs)来自荟萃分析或大型汇总分析:根据八种饮食和生活方式风险因素,男性和女性的 CRC 可归因病例的估计值分别如下:英格兰:67% 和 60%;苏格兰:68% 和 59%,威尔士:66% 和 61%;北爱尔兰:67% 和 61%;英国:67% 和 60%:英国:67%和 60%。如果不考虑吸烟因素,英国的男性吸烟率为 61%,女性为 52%。根据四种饮食和生活方式风险因素,BC 的估计值如下:英格兰:26%;苏格兰:27%;威尔士:25%;北爱尔兰:26%;英国:27%:结论:在英国,高达 67% 的 CRC 和 27% 的 BC 可归因于可改变的饮食和生活方式因素。由于暴露于风险因素的普遍程度不同,各国的 PAR 存在一定差异。
{"title":"Population attributable risk for colorectal and breast cancer in England, Wales, Scotland, Northern Ireland, and the United Kingdom.","authors":"Shatabdi Goon, Hanseul Kim, Edward L Giovannucci","doi":"10.12688/amrcopenres.12980.2","DOIUrl":"https://doi.org/10.12688/amrcopenres.12980.2","url":null,"abstract":"<p><strong>Background: </strong>The population attributable risk (PAR) is a statistic commonly used for quantifying preventability of cancer. We report here PAR estimates for the United Kingdom (UK) along with its constituent countries for up-to-date risk factor-attributable colorectal cancer (CRC) and breast cancer (BC), focusing on diet and nutrition related factors and tobacco (CRC) using representative national surveys.</p><p><strong>Methods: </strong>The PAR was calculated using established, modifiable risk factors by the World Cancer Research Fund/American Institute of Cancer Research (WCRF/AICR): physical activity, body mass index (BMI), alcoholic drinks, red meat, processed meat, dietary fiber, dietary calcium, as well as cigarette smoking for CRC, and physical activity, BMI, alcoholic drinks, and fruits and vegetable consumption for BC. National prevalence estimates and relative risks (RRs) for CRC and BC were obtained from meta-analyses or large pooled analyses.</p><p><strong>Results: </strong>Based on eight dietary and lifestyle risk factors, the estimates for attributable cases of CRC for males and females, respectively, were as follows: England: 67% and 60%; Scotland: 68% and 59%, Wales: 66% and 61%; Northern Ireland: 67% and 61%; and UK: 67% and 60%. Excluding smoking, the PAR for the UK was 61% for men and 52% for women. Based on four dietary and lifestyle risk factors, the estimates for BC were as follows: England: 26%, Scotland: 27%; Wales: 25%; Northern Ireland: 26%; and UK: 27%.</p><p><strong>Conclusion: </strong>Up to 67% for CRC and 27% of BC were attributable to modifiable dietary and lifestyle factors in the UK. Moderate differences in PAR are observed between countries due to different prevalence of exposure to risk factors.</p>","PeriodicalId":72183,"journal":{"name":"AMRC open research","volume":"3 ","pages":"11"},"PeriodicalIF":0.0,"publicationDate":"2022-03-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11064977/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140862037","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
Measuring quality of life in autistic adults: the reliability and validity of the Brief Version of the World Health Organization Quality of Life scale 测量自闭症成年人的生活质量:世界卫生组织生活质量量表简本的可靠性和有效性
Pub Date : 2022-02-07 DOI: 10.12688/amrcopenres.13030.1
David Mason, J. Rodgers, Deborah Garland, Colin Wilson, J. Parr, H. McConachie
Background: Measurement of the Quality of Life (QoL) of autistic adults is receiving increasing empirical attention. The World Health Organisation (WHO) QoL measure (WHOQoL-BREF) has been utilised in several studies. Autistic adults report significantly lower QoL compared to neurotypical adults across several domains. However, no studies have investigated the suitability of WHOQoL-BREF as a tool to measure the QoL of autistic adults. Methods: This study explored the validity and reliability of WHOQoL-BREF with a mixed methods approach. Quantitatively, structural validity was explored by an exploratory factor analysis of WHOQoL-BREF data from 352 autistic adults aged 18-80 years. Qualitatively, four discussion groups (n=20 autistic people) were conducted to explore the face validity of the items of WHOQoL-BREF. Results: The five factor structure was conceptually similar to the WHO formulation of QoL, with adequate to good internal consistency of domains; however, some items loaded in an unexpected way. The reasons for these unexpected loadings were explored in the transcripts from the discussion groups. Conclusions: The findings suggest that the WHOQoL-BREF has acceptable validity and reliability for use with autistic adults; however caution is needed when interpreting data from the social domain and some other items
背景:自闭症成年人生活质量(QoL)的测量正受到越来越多的实证关注。世界卫生组织(世界卫生组织)生活质量测量(WHOQoL-BREF)已用于多项研究。在几个领域,自闭症成年人的生活质量明显低于神经正常成年人。然而,没有研究调查WHOQoL BREF作为衡量自闭症成年人生活质量的工具的适用性。方法:采用混合方法探讨WHOQoL BREF的有效性和可靠性。从数量上讲,通过对352名18-80岁自闭症成年人的WHOQoL BREF数据进行探索性因素分析,探讨了结构有效性。定性地,我们进行了四个讨论小组(n=20名自闭症患者)来探索WHOQoL BREF项目的面孔有效性。结果:五因素结构在概念上与世界卫生组织的QoL配方相似,具有足够的内部一致性;但是,有些项目以意外的方式加载。讨论小组的记录中探讨了这些意外负载的原因。结论:研究结果表明,WHOQoL BREF对自闭症成年人的使用具有可接受的有效性和可靠性;然而,在解释来自社交领域和其他项目的数据时需要谨慎
{"title":"Measuring quality of life in autistic adults: the reliability and validity of the Brief Version of the World Health Organization Quality of Life scale","authors":"David Mason, J. Rodgers, Deborah Garland, Colin Wilson, J. Parr, H. McConachie","doi":"10.12688/amrcopenres.13030.1","DOIUrl":"https://doi.org/10.12688/amrcopenres.13030.1","url":null,"abstract":"Background: Measurement of the Quality of Life (QoL) of autistic adults is receiving increasing empirical attention. The World Health Organisation (WHO) QoL measure (WHOQoL-BREF) has been utilised in several studies. Autistic adults report significantly lower QoL compared to neurotypical adults across several domains. However, no studies have investigated the suitability of WHOQoL-BREF as a tool to measure the QoL of autistic adults. Methods: This study explored the validity and reliability of WHOQoL-BREF with a mixed methods approach. Quantitatively, structural validity was explored by an exploratory factor analysis of WHOQoL-BREF data from 352 autistic adults aged 18-80 years. Qualitatively, four discussion groups (n=20 autistic people) were conducted to explore the face validity of the items of WHOQoL-BREF. Results: The five factor structure was conceptually similar to the WHO formulation of QoL, with adequate to good internal consistency of domains; however, some items loaded in an unexpected way. The reasons for these unexpected loadings were explored in the transcripts from the discussion groups. Conclusions: The findings suggest that the WHOQoL-BREF has acceptable validity and reliability for use with autistic adults; however caution is needed when interpreting data from the social domain and some other items","PeriodicalId":72183,"journal":{"name":"AMRC open research","volume":"1 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-02-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47092686","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 2
Symptom burden of people with progressive ataxia, and its wider impact on their friends and relatives: a cross-sectional study. 进行性共济失调患者的症状负担及其对其亲友的广泛影响:一项横断面研究
Pub Date : 2021-11-30 eCollection Date: 2021-01-01 DOI: 10.12688/amrcopenres.13036.1
Anja Lowit, Julie Greenfield, Emily Cutting, Ruby Wallis, Marios Hadjivassiliou

Background: Progressive ataxias are complex disorders that result in a wide variety of symptoms. Whilst we currently have a relatively good understanding of the symptom patterns associated with the various types of ataxia, and how these diseases progress over time, their impact on the person with ataxia is less well understood. In addition, little is known about how carers, friends and families are affected by them. This paper aims to provide preliminary information on the presence and impact of medical symptoms and day-to-day challenges on people with ataxia and their friends and relatives.

Method: Data were extracted from a survey by Ataxia UK for their members. The views of 366 people with ataxia and 52 friends and relatives are reported. Data were analysed for the entire groups, as well as for the three most common ataxia types represented in the sample, Friedreich's ataxia, inherited ataxia (excluding Friedreich's ataxia), and cerebellar ataxia of unknown cause.

Results: The survey confirmed the symptom patterns described in previous research, but further showed that the impact of these symptoms can vary across ataxia populations. Similar findings were observed for day-to-day challenges. Friends and relatives experienced similar challenges to people with ataxia, indicating that support provided has to consider those supporting people with ataxia as well as the patient. Respondents also highlighted limitations in terms of accessing support services, and not all services were able to cater fully to their specific needs.

Conclusion: This study begins to provide information that can be used in further research to explore the needs of people with ataxia and their carers, friends, and relatives. Such research will support treatment trial design, ensuring patients' needs are considered, help to tailor support services to their needs, and ensure health care professionals have the necessary skills to fully address them.

背景:进行性共济失调是一种复杂的疾病,可导致多种症状。虽然我们目前对与各种类型的共济失调相关的症状模式有了相对较好的了解,以及这些疾病如何随着时间的推移而发展,但它们对共济失调患者的影响却知之甚少。此外,人们对护理人员、朋友和家人如何受到它们的影响知之甚少。本文旨在提供有关共济失调患者及其亲友的医学症状和日常挑战的存在和影响的初步信息。方法:数据摘自英国共济协会对其会员的调查。报告了366名共济失调患者和52名亲友的看法。分析了整个组的数据,以及样本中代表的三种最常见的共济失调类型,弗里德赖希共济失调,遗传性共济失调(不包括弗里德赖希共济失调)和原因不明的小脑性共济失调。结果:该调查证实了先前研究中描述的症状模式,但进一步表明,这些症状的影响可能因共济失调人群而异。在日常挑战中也观察到类似的结果。朋友和亲戚经历了与共济失调患者类似的挑战,这表明所提供的支持必须考虑到那些支持共济失调患者和患者的人。答复者还强调了在获得支助服务方面的限制,并不是所有的服务都能充分满足他们的具体需要。结论:本研究为进一步研究共济失调患者及其照顾者、朋友和亲戚的需求提供了信息。此类研究将支持治疗试验设计,确保考虑到患者的需求,帮助根据患者的需求量身定制支持服务,并确保卫生保健专业人员具备充分解决这些问题的必要技能。
{"title":"Symptom burden of people with progressive ataxia, and its wider impact on their friends and relatives: a cross-sectional study.","authors":"Anja Lowit, Julie Greenfield, Emily Cutting, Ruby Wallis, Marios Hadjivassiliou","doi":"10.12688/amrcopenres.13036.1","DOIUrl":"10.12688/amrcopenres.13036.1","url":null,"abstract":"<p><strong>Background: </strong>Progressive ataxias are complex disorders that result in a wide variety of symptoms. Whilst we currently have a relatively good understanding of the symptom patterns associated with the various types of ataxia, and how these diseases progress over time, their impact on the person with ataxia is less well understood. In addition, little is known about how carers, friends and families are affected by them. This paper aims to provide preliminary information on the presence and impact of medical symptoms and day-to-day challenges on people with ataxia and their friends and relatives.</p><p><strong>Method: </strong>Data were extracted from a survey by Ataxia UK for their members. The views of 366 people with ataxia and 52 friends and relatives are reported. Data were analysed for the entire groups, as well as for the three most common ataxia types represented in the sample, Friedreich's ataxia, inherited ataxia (excluding Friedreich's ataxia), and cerebellar ataxia of unknown cause.</p><p><strong>Results: </strong>The survey confirmed the symptom patterns described in previous research, but further showed that the impact of these symptoms can vary across ataxia populations. Similar findings were observed for day-to-day challenges. Friends and relatives experienced similar challenges to people with ataxia, indicating that support provided has to consider those supporting people with ataxia as well as the patient. Respondents also highlighted limitations in terms of accessing support services, and not all services were able to cater fully to their specific needs.</p><p><strong>Conclusion: </strong>This study begins to provide information that can be used in further research to explore the needs of people with ataxia and their carers, friends, and relatives. Such research will support treatment trial design, ensuring patients' needs are considered, help to tailor support services to their needs, and ensure health care professionals have the necessary skills to fully address them.</p>","PeriodicalId":72183,"journal":{"name":"AMRC open research","volume":" ","pages":"28"},"PeriodicalIF":0.0,"publicationDate":"2021-11-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11064976/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42256423","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
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