Parkinson's Disease in Asian Americans

Study Overview
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Brief Summary
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The ultimate goal of this project is to use the findings to develop culturally appropriate programs and resources that can be disseminated to key stakeholders to improve access to PD care and increase inclusivity in PD research for Asian Americans. This study will serve as a first step towards developing broader community and patient education programs and active outreach campaigns to increase PD-specific literacy among Asian Americans. The results from this study will elucidate the role that language barriers, cultural perceptions, family influence, and other predisposing, enabling, or need factors have on delaying care for PD among Asian Americans. It will also provide much needed insight on how to improve inclusion of Asian Americans in PD research studies.

Official Title
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Barriers and Motivators Associated With Access to Care and Participation in Research Studies for Parkinson's Disease Among Asian Americans

Conditions
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Parkinson's Disease

Intervention / Treatment
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* Other: Interviews and Surveys


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Objective 1 (chart review): Chinese or Vietnamese ethnicity Age: 18 years of age or older Diagnosed or presented for PD care at the Tufts Medical Center (TMC) Movement Disorders Clinic (MDC) from January 1, 2010 to December 31, 2019. Objective 2 (qualitative study): Asian American person diagnosed with PD: Diagnosed with PD Chinese or Vietnamese ethnicity Age: 18 years of age or older Able to participate in an interview by phone or on Zoom Able to provide informed consent Primary caregivers of Asian American PD patients recruited into the study: Age: 18 years of age or older First-degree family member or spouse Self-identified as a primary caregiver of an Asian American person with PD Able to participate in an interview by phone or on Zoom Able to provide informed consent Clinicians: a. Any clinician (e.g. primary care provider, neurologist, resident, nurse, nurse practitioner, etc) that takes care of PD patients. b. Age: 18 years of age or older Key advocates in the Asian American community working specifically with the Asian elderly population. Employee or volunteer for a community-based organization working with the Asian elderly population (e.g. Greater Boston Chinese Golden Age Center, South Cove Manor, and Midtown Home Health Services) or other organizations working with PD patients and the elderly (e.g. Massachusetts Council on Aging and the Massachusetts Chapter of the American Parkinson's Disease Association) Age: 18 years of age or older Able to participate in a focus group discussion on Zoom Objective 3 (surveys of Asian American individuals with PD): Chinese or Vietnamese ethnicity Diagnosed with PD Age: 18 years of age or older Exclusion Criteria: Objective 1: 1. Patients diagnosed with juvenile-onset Parkinson's Disease Objective 2: PD patients only: Patients with juvenile-onset Parkinson's Disease Patients diagnosed with dementia Patients on medication for cognitive impairment, e.g., anti-psychotics, donepezil (Aricept), rivastigmine (Exelon), and galantamine (Razadyne) No exclusion criteria for other stakeholder groups (caregivers, clinical providers, key community advocates). Objective 3: 1. Patients with juvenile-onset Parkinson's Disease

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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Accepts Healthy Volunteers

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Parkinson's disease patients<br> | Other: Interviews and Surveys<br>* Qualitative interviews and surveys<br>|
| Parkinson's disease patients' care-givers<br> | Other: Interviews and Surveys<br>* Qualitative interviews and surveys<br>|
| Clinicians<br> | Other: Interviews and Surveys<br>* Qualitative interviews and surveys<br>|
| Community stakeholders<br> | Other: Interviews and Surveys<br>* Qualitative interviews and surveys<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Delay in seeking care | For the main outcome (delay in seeking care), the investigators will rely on self-report. Data obtained from Objectives 1 and 2 will be used to inform the development of a survey question (or a series of questions) that will capture this construct. The questionnaire will be piloted among a subgroup of participants recruited from the TMC MDC to calibrate the self-reported measure against data obtained from their medical records. | September 2022 - August 2024 |