Promoting Parkinson's disease trial participation in rural and coastal communities

促进农村和沿海社区参与帕金森病试验

• 批准号: 2898794
• 金额: --
• 依托单位: Plymouth University
• 依托单位国家: 英国
• 项目类别: Studentship
• 财政年份: 2024
• 资助国家: 英国
• 起止时间: 2024 至 无数据
• 项目状态: 未结题
• 来源: https://gtr.ukri.org/projects?ref=studentship-2898794
• 关键词: Promoting; Parkinson; disease; trial; participation

The South West Peninsula of Devon and Cornwall comprises a population that is older than the national average and includes deprived rural and coastal communities, with various challenges that impact healthcare access and health research opportunity. The NIHR INCLUDE project identified people living in rural and remote areas as a group currently under-served by health research, characterised by lower inclusion in research, high healthcare burden that is not matched by research volume, poorer health outcomes and lower engagement with healthcare interventions. This population are included in other identified groups, such as people at age extremes and those experiencing digital exclusion/disadvantage. Delivery of effective healthcare requires well-designed health research. Randomised trials are an essential element of healthcare research, requiring substantial resources. Delivering trials can be challenging in any setting, but becomes particularly difficult in rural and coastal settings. Covid-19 has seen the development of new models of care and research delivery utilising remote methodologies and digital technologies. Parkinson's disease (PD), an age-related neurodegenerative disease, is the fastest growing neurological condition worldwide. As in other disease areas, trial delivery is impacted by slow recruitment and poor retention. Additionally, study populations are not representative of the population living with the disease, meaning that trial findings are not generalisable. With an ageing population, the South West Peninsula has higher prevalence of PD than the national average. The aim of this studentship is to explore the barriers and facilitators of trial participation for people with Parkinson's (PwP) in rural and coastal communities, and in particular the potential role of digital technologies in supporting engagement and inclusivity. The studentship will encompass 3 work packages (WP 1-3). WP1 will involve an extension of an ongoing systematic review (being undertaken at University of Plymouth) of interventions that support trial recruitment and retention in PD. The student will also undertake an updated systematic review of digital interventions that support trial recruitment and retention with a focus on neurodegenerative disease. The findings from WP1 will inform the topic guide for WP2 and may identify interventions for WP3. In WP2 the student will undertake a qualitative study (comprising focus groups and semi-structured interviews) exploring engagement with healthcare and attitudes to clinical trial participation in PwP within rural and coastal communities, and the perceived barriers/facilitators highlighted by individuals, in particular any that intersect with key characteristics of rurality and/or coastal living such as the physical, social and technological environment. The study will allow for exploration of interventions to support trial participation that might translate across localities, and understanding of where bespoke solutions may be needed. WP3 will comprise the identification, development and iteration an intervention to support trial participation in the target population, leading to the development of a protocol for evaluation in a SWAT.

德文郡和康沃尔郡西南半岛的人口组成的人口比全国平均水平年龄较大，其中包括贫困的农村和沿海社区，面临各种挑战，影响医疗保健获得和健康研究机会。 NIHR包括将居住在农村和偏远地区的人们确定为目前由健康研究服务不足的小组，其特征是研究量较低，高医疗保健负担与研究量，健康量较差，健康成果较差和较低的医疗保健干预措施的参与度不符。该人群包括在其他已确定的群体中，例如极端年龄的人和经历数字排除/劣势的人。提供有效的医疗保健需要精心设计的健康研究。随机试验是医疗研究的重要因素，需要大量资源。在任何环境中进行试验都可能具有挑战性，但在农村和沿海环境中变得尤为困难。 Covid-19看到了利用远程方法和数字技术的新型护理和研究模型的发展。帕金森氏病（PD）是一种与年龄相关的神经退行性疾病，是全球增长最快的神经系统疾病。与其他疾病地区一样，试验的招募缓慢和保留率不佳。此外，研究人群不能代表患有该疾病的人群，这意味着试验结果不可概括。随着人口老龄化，西南半岛的PD患病率高于全国平均水平。该学生验证的目的是探索帕金森氏症患者（PWP）在农村和沿海社区中的障碍和促进者，尤其是数字技术在支持参与和包容性方面的潜在作用。这些学生将包括3个工作包（WP 1-3）。 WP1将涉及对正在进行的系统审查（在普利茅斯大学进行）的干预措施，以支持PD试验招募和保留。该学生还将对数字干预措施进行更新的系统审查，以支持试验招募和保留，重点是神经退行性疾病。 WP1的发现将为WP2的主题指南提供信息，并可能确定WP3的干预措施。在WP2中，学生将进行一项定性研究（包括焦点小组和半结构化访谈），探索与医疗保健和对临床试验参与农村和沿海社区中PWP的态度的参与，以及个人所彰显的障碍/辅助因子，特别是与环境和/或沿海沿海和/或沿海或沿海和/或/或沿海沿海和/或/或沿海活动相关的任何人。这项研究将允许探索干预措施，以支持可能在各个地方转化的试验参与，并了解可能需要定制解决方案的地方。 WP3将构成识别，开发和迭代的干预措施，以支持对目标人群的参与，从而制定了在SWAT中进行评估方案的制定。