Understanding Parkinson's Disease in Asian Americans

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

This study is trying to understand how language and cultural beliefs affect Asian Americans with Parkinson's Disease and to find better ways to help them access care and support.

Quick facts

• Study type: Observational
• Enrollment: 430 (estimated)
• Ages: 18 Years and up
• Sex: All
• Sponsor: Tufts University (Academic / other)
• Locations: 1 site (Boston, Massachusetts)
• Trial ID: NCT05532982 on ClinicalTrials.gov

What this trial studies

This project aims to develop culturally appropriate programs and resources to improve access to Parkinson's Disease (PD) care for Asian Americans. It will investigate the impact of language barriers, cultural perceptions, and family influence on the delay of PD care within this community. The study will utilize interviews and surveys to gather insights from patients, caregivers, and clinicians, ultimately aiming to enhance inclusion of Asian Americans in PD research and education efforts.

Who should consider this trial

Good fit: Ideal candidates include Asian Americans of Chinese or Vietnamese descent, aged 18 and older, who have been diagnosed with Parkinson's Disease.

Not a fit: Patients who do not identify as Asian American or those under 18 years of age may not benefit from this study.

Why it matters

Potential benefit: If successful, this study could lead to improved access to PD care and resources for Asian American patients.

How similar studies have performed: While this approach is focused on a specific ethnic group, similar studies have shown success in improving health outcomes through culturally tailored interventions.

Eligibility criteria

Inclusion Criteria:

* Objective 1 (chart review):

  1. Chinese or Vietnamese ethnicity
  2. Age: 18 years of age or older
  3. 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):

  1. Asian American person diagnosed with PD:

     1. Diagnosed with PD
     2. Chinese or Vietnamese ethnicity
     3. Age: 18 years of age or older
     4. Able to participate in an interview by phone or on Zoom
     5. Able to provide informed consent
  2. Primary caregivers of Asian American PD patients recruited into the study:

     1. Age: 18 years of age or older
     2. First-degree family member or spouse
     3. Self-identified as a primary caregiver of an Asian American person with PD
     4. Able to participate in an interview by phone or on Zoom
     5. Able to provide informed consent
  3. Clinicians:

     1. Any clinician (e.g. primary care provider, neurologist, resident, nurse, nurse practitioner, etc) that takes care of PD patients.
     2. Age: 18 years of age or older
  4. Key advocates in the Asian American community working specifically with the Asian elderly population.

     1. 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)
     2. Age: 18 years of age or older
     3. Able to participate in a focus group discussion on Zoom

        Objective 3 (surveys of care partners of Asian American individuals with PD):

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  1. Chinese or Vietnamese ethnicity
  2. Primary care partner of a family member with Parkinson's Disease
  3. Age: 18 years of age or older
  4. Care partner or family member with Parkinson's Disease must be of Asian descent

Exclusion Criteria:

Objective 1:

1\. Patients diagnosed with juvenile-onset Parkinson's Disease

Objective 2:

PD patients only:

1. Patients with juvenile-onset Parkinson's Disease
2. Patients diagnosed with dementia
3. 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

Where this trial is running

Boston, Massachusetts

• Tufts University School of Medicine — Boston, Massachusetts, United States (Recruiting)

Study contacts

• Study coordinator: Alice Tang, PhD

Conditions Parkinson's Disease