Evaluating the role of the caregiver in the quality of life of people with Parkinson?s disease: opportunities for intervention

项目概述：该奖学金的目标是准备申请人，凯特Perepezko， 独立的研究职业生涯侧重于设计，实施和传播干预措施，以改善 生活质量的人与神经退行性疾病，包括帕金森病（PD）。到 为了实现这一目标，拟议的奖学金包括两个互补的组成部分：（1）研究 一个项目，将进一步我们的照顾者的特点，与人们的生活质量的理解 （2）培训计划，包括正式课程、导师、数据分析培训（包括 增长混合建模和混合方法分析）、出版物和教学活动，以及 专业发展活动。Perepezko女士将得到约翰斯大学强大的导师团队的支持。 霍普金斯布隆伯格公共卫生学院和约翰霍普金斯大学医学院， 帕金森病，干预发展，和先进的分析方法（定量和 定性）。培训计划将帮助申请人; a）发展生活质量和PD方面的知识 研究; B）发展纵向数据分析和混合方法分析的强大方法技能; 以及c）参与研究结果的传播和更广泛的PD研究社区内的网络。一 经常观察到患有神经退行性疾病如PD的人的生活质量下降。 生活质量是一个重要的公共卫生问题，制定干预措施以提高质量是一个优先事项 在PD人群中的生活。针对其他疾病患者护理者的干预措施，包括 老年痴呆症，已经证明对护理接受者的生活质量产生了积极影响。然而， 关于与PD患者生活质量相关的护理人员特征，或者是否进行了类似的干预 该设计在该人群中是可行的。因此，拟议的项目将：1）描述目前的证据， 与帕金森病患者生活质量相关的护理人员因素; 2）识别 与PD患者不同生活质量轨迹相关的护理人员特征;以及3） 采用半结构化访谈，在一个有目的的样本中探索生活质量的观点， 护理人员和PD患者。这些目标将调查与现有的数据集从纵向， 多地点帕金森病结局项目（帕金森基金会，POP;最大的纵向帕金森病 疾病研究迄今为止有5，500人）和研究期间通过定性调查开发的数据集。 拟议的研究直接涉及2016年NIA老龄化研究战略方向（目标C） 这就需要更多的研究来"开发有效的干预措施来维持健康、福祉和功能 并预防或减轻与年龄有关的疾病的负担。"我们的发现有可能改善 干预措施的设计和有效性，以改善帕金森病患者的生活质量。

PROJECT SUMMARY: The goal of this fellowship is to prepare the applicant, Kate Perepezko, for an independent research career focused on designing, implementing, and disseminating interventions to improve quality of life for people living with neurodegenerative diseases, including Parkinson’s disease (PD). To accomplish this goal, the proposed fellowship consists of two complementary components: (1) a research project that will further our understanding of caregiver characteristics that are related to quality of life in people with PD; and (2) a training plan comprised of formal coursework, mentorship, data analysis training (including growth mixture modeling and mixed methods analysis), publications, and didactic activities, and professionaldevelopment activities. Ms. Perepezko will be supported by a strong mentorship team at Johns Hopkins Bloomberg School of Public Health and Johns Hopkins University School of Medicine with expertise in Parkinson’s disease, intervention development, and advanced analytic methodology (quantitative and qualitative). The training program will help the applicant; a) develop knowledge in quality of life and PD research; b) develop strong methodological skills in longitudinal data analysis and mixed methods analysis; and c) engage in the dissemination of findings and networking within the broader PD research community. A decrease in quality of life in people with neurodegenerative diseases such as PD is frequently observed. Quality of life is a significant public health concern and it is a priority to develop interventions to improve quality of life in the PD population. Interventions targeting caregivers of people with other diseases, including dementia, have demonstrated positive impacts on quality of life in care recipients. However, little is known about caregiver characteristics that are related to quality of life in people with PD or if a similar intervention design is feasible in this population. Accordingly, the proposed project will: 1) describe the current evidence on caregiver factors that are associated with quality of life in people living with Parkinson’s disease; 2) identify caregiver characteristics that are associated with different trajectories of quality of life in people with PD; and 3) explore perspectives on quality of life employing semi-structured interviews among a purposive sample of caregivers and people with PD. These aims will be investigated with an existing dataset from the longitudinal, multi-site Parkinson’s Outcomes Project (Parkinson Foundation, POP; the largest longitudinal Parkinson’s disease study to date with 5,500) and a data set developed during the study through a qualitative investigation. The proposed research directly addresses the 2016 NIA Strategic Directions for Research on Aging (Goal C) that calls for more research on “develop[ing] effective interventions to maintain health, well-being, and function and prevent or reduce the burden of age-related diseases.” Our findings have the potential to to improve the design and the effectiveness of interventions to ameliorate quality of life in people with Parkinson’s disease.