Population Health Sciences, University of Bristol Faculty of Health Sciences, Bristol, UK
Population Health Sciences, University of Bristol Faculty of Health Sciences, Bristol, UK.
BMJ Open. 2022 May 11;12(5):e057947. doi: 10.1136/bmjopen-2021-057947.
People with parkinsonism are a highly heterogeneous group and the disease encompasses a spectrum of motor and non-motor symptoms which variably emerge and manifest across the disease course, fluctuate over time and negatively impact quality of life. While parkinsonism is not directly the result of ageing, it is a condition that mostly affects older people, who may also be living with frailty and multimorbidity. This study aims to describe the broad range of health needs for people with parkinsonism and their carers in relation to their symptomatology, disability, disease stage, comorbidities and sociodemographic characteristics.
In this single site cross-sectional study, people with parkinsonism will be sent a study information pack for themselves and their primary informal caregiver, if relevant. Data are collected via questionnaire, with additional support, if required, to maximise participation. A specific strategy has been developed to target and proactively recruit patients lacking capacity to consent, including those in residential care settings, with input from a personal consultee prior to completion of a bespoke questionnaire by a representative. Caregivers are also recruited to look at various health outcomes. Results will be displayed as descriptive statistics and regression models will be used to test simple associations and interactions.
This protocol was approved by the London-Brighton & Sussex Research Ethics Committee (REC reference 20/LO/0890). The results of this protocol will be disseminated through publication in an international peer-reviewed journal; presentation at academic meetings and conferences; and a lay summary uploaded to the PRIME-Parkinson website.
ISRCTN11452969; Pre-results.
帕金森病患者是一个高度异质的群体，疾病涵盖了一系列运动和非运动症状，这些症状在疾病过程中会以不同的方式出现和表现，随时间波动，并对生活质量产生负面影响。虽然帕金森病不是直接由衰老引起的，但它是一种主要影响老年人的疾病，这些老年人可能还患有虚弱和多种合并症。本研究旨在描述帕金森病患者及其照顾者在症状、残疾、疾病阶段、合并症和社会人口学特征方面的广泛健康需求。
在这项单站点横断面研究中，将向帕金森病患者发送一份研究信息包，供他们自己和主要的非正式照顾者（如果相关）使用。通过问卷调查收集数据，如果需要，将提供额外的支持，以最大限度地提高参与度。已经制定了一项专门的策略来针对和积极招募缺乏同意能力的患者，包括居住在护理机构中的患者，并在完成专门的问卷之前，由一名个人顾问提供意见。还招募了照顾者来观察各种健康结果。结果将以描述性统计数据呈现，并使用回归模型来测试简单的关联和交互作用。
本方案已获得伦敦-布莱顿和苏塞克斯研究伦理委员会（REC 参考号 20/LO/0890）的批准。本方案的结果将通过在国际同行评议期刊上发表、在学术会议和会议上展示以及在 PRIME-Parkinson 网站上上传一份通俗摘要来传播。
ISRCTN86215755；预结果。
