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

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.

Study Overview

• Status: Recruiting
• Conditions: Parkinson's Disease
• Intervention / Treatment: Other: Interviews and Surveys

• Study Type: Observational
• Enrollment (Estimated): 430

Contacts and Locations

• Study Contact: Name: Alice Tang, PhD; Phone Number: 617-636-2140; Email: alice.tang@tufts.edu
• Study Contact Backup: Name: Naheed Esar; Email: nesar@asianwomenforhealth.org

Study Locations

• United States
  • Massachusetts
    • Boston, Massachusetts, United States, 02111
      • Recruiting
      • Tufts University School of Medicine
      • Contact: Alice Tang; Phone Number: 617-513-9104; Email: alice.tang@tufts.edu

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: Yes

• Sampling Method: Non-Probability Sample

Study Population

Chinese and Vietnamese patients with Parkinson's disease and their care partners, clinicians, and community advocates.

Description

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):

  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

Study Plan

How is the study designed?

Design Details

• Observational Models: Other
• Time Perspectives: Cross-Sectional

Number of groups / cohorts

4

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
Parkinson's disease patients; Parkinson's disease patients of Asian descent	Other: Interviews and Surveys; Qualitative interviews and surveys
Parkinson's disease patients' care-givers; Care partners of Parkinson's Disease patients of Asian descent	Other: Interviews and Surveys; Qualitative interviews and surveys
Clinicians; Clinical providers of patients with Parkinson's disease, including physicians, nurses, nurse practitioners, physician assistants, physical therapists, etc.	Other: Interviews and Surveys; Qualitative interviews and surveys
Community stakeholders; Advocates for the Asian American community	Other: Interviews and Surveys; Qualitative interviews and surveys

What is the study measuring?

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.	November 2022 - August 2024

Collaborators and Investigators

• Sponsor: Tufts University
• Collaborators: Naheed Esar, Asian Women for Health

Study record dates

Study Major Dates

• Study Start (Actual): October 15, 2022
• Primary Completion (Estimated): November 30, 2024
• Study Completion (Estimated): November 30, 2024

Study Registration Dates

• First Submitted: September 6, 2022
• First Submitted That Met QC Criteria: September 6, 2022
• First Posted (Actual): September 8, 2022

Study Record Updates

• Last Update Posted (Actual): May 20, 2024
• Last Update Submitted That Met QC Criteria: May 16, 2024
• Last Verified: May 1, 2024

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Parkinsonian Disorders; Basal Ganglia Diseases; Movement Disorders; Synucleinopathies; Neurodegenerative Diseases; Parkinson Disease
• Other Study ID Numbers: MJFF-020935

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: UNDECIDED

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No