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

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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.