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

项目摘要：该奖学金的目标是为申请者凯特·佩雷佩兹科 独立研究生涯专注于设计、实施和传播干预措施，以改善 患有神经退行性疾病的患者的生活质量，包括帕金森氏病(PD)。至 为了实现这一目标，拟议的研究金由两个相辅相成的部分组成：(1)研究 这个项目将进一步加深我们对照顾者特征的理解，这些特征与人们的生活质量有关 (2)包括正式课程、指导、数据分析培训(包括 生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。佩雷佩兹科女士将在Johns得到一个强大的指导团队的支持 霍普金斯大学彭博公共卫生学院和约翰霍普金斯大学医学院 帕金森氏病、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者：a)发展生活质量和PD方面的知识 研究；b)在纵向数据分析和混合方法分析方面培养很强的方法技能； 以及c)在更广泛的PD研究界内传播研究结果和建立联系。一个 帕金森病等神经退行性疾病患者的生活质量下降是经常观察到的。 生活质量是一个重大的公共卫生问题，制定干预措施以提高质量是优先事项 在帕金森州人口中的生活。针对患有其他疾病的照顾者的干预措施，包括 痴呆症对护理接受者的生活质量产生了积极的影响。然而，人们对此知之甚少 关于帕金森病患者的照顾者特征与生活质量相关的问题，或者是否进行了类似的干预 在这个群体中，设计是可行的。因此，拟议的项目将：1)描述关于以下方面的现有证据 与帕金森氏症患者生活质量相关的照顾者因素；2)确定 与帕金森病患者不同生活质量轨迹相关的照顾者特征；3) 在有目的的样本中使用半结构化访谈来探索生活质量的观点 护理员和警局的人。这些目标将利用来自纵向的现有数据集进行调查， 多站点帕金森结局项目(帕金森基金会，POP；最大的纵向帕金森氏症 迄今已进行了5 500项疾病研究)，并在研究期间通过定性调查建立了数据集。 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“开发有效的干预措施来维持健康、幸福和功能”。 并预防或减轻与年龄相关的疾病负担。我们的发现有可能改善 旨在改善帕金森氏症患者生活质量的干预措施的设计和有效性。

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.