Parkinson's Disease in Asian Americans

Phase

N/A

Condition

Parkinson's Disease

Dyskinesias

Treatment

Interviews and Surveys

Clinical Study ID

NCT05532982

MJFF-020935

Ages > 18
All Genders
Accepts Healthy Volunteers

Study Summary

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.

Eligibility Criteria

Inclusion

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) MovementDisorders 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:
Any clinician (e.g. primary care provider, neurologist, resident, nurse,nurse practitioner, etc) that takes care of PD patients.
Age: 18 years of age or older
Key advocates in the Asian American community working specifically with theAsian elderly population.
Employee or volunteer for a community-based organization working with theAsian elderly population (e.g. Greater Boston Chinese Golden Age Center,South Cove Manor, and Midtown Home Health Services) or other organizationsworking with PD patients and the elderly (e.g. Massachusetts Council onAging and the Massachusetts Chapter of the American Parkinson's DiseaseAssociation)
Age: 18 years of age or older
Able to participate in a focus group discussion on Zoom Objective 3 (surveys of care partners of Asian American individuals withPD):
Chinese or Vietnamese ethnicity
Primary care partner of a family member with Parkinson's Disease
Age: 18 years of age or older
Care partner or family member with Parkinson's Disease must be of Asian descent

Exclusion

Exclusion Criteria:

Objective 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:

Patients with juvenile-onset Parkinson's Disease

Study Design