Parkinson's Research With Inclusion, Diversity and Equity

Recruiting

• Conditions: Parkinson Disease

• Registration Number: NCT05556993
• Lead Sponsor: University of Nevada, Las Vegas

Brief Summary

The purpose of this study is to identify the health and healthcare needs of LGBTQIA+ and non LGBTQIA+ communities living with Parkinson's disease.

Detailed Description

Four million LGBTQIA+ adults age 50+ live in the U.S. Very little is known about the needs of the LGBTQIA+ community living with Parkinson's disease (PD). This research will work with the LGBTQIA+ community to learn about the health needs of those living with PD. The researchers will also talk to caregivers about their care experiences, and ask healthcare providers about their work with LGBTQIA+ communities living with PD. LGBTQIA+ adults have more health and care problems. This study will test if LGBTQIA+ adults with PD experience more health and care problems. This study will also see if caregivers have more problems and how providers are caring for the LGBTQIA+ community living with PD. LGBTQIA+ adults living with PD, caregivers and care providers will be asked to fill out a survey. Some caregivers will be asked to participate in an hour interview to learn about their experiences. Surveys and interviews can be done by phone or internet. The study will find ways to improve health and care of LGBTQIA+ people living with PD. The study will share findings so others can help to make care better for the LGBTQIA+ community.

Study Timeline

• Study Start: 2022-06-29
• Study First Submitted: 2022-09-22
• Study First Submitted QC: 2022-09-22
• Study First Posted: 2022-09-27
• Status Verified: 2022-10
• Last Update Submitted: 2022-10-05
• Last Update Posted: 2022-10-10
• Primary Completion: 2024-04
• Study Completion: 2024-11

Recruitment & Eligibility

• Status: RECRUITING
• Sex: All
• Target Recruitment: 600

Inclusion Criteria

• Identify as LGBTQIA+ or non-LGBTQIA+
• Aged 18+
• Ability to complete the phone or online survey in English/Spanish
• Diagnosis of Parkinson's disease or a caregiver of a person with Parkinson's disease
• Health care professional that provides care to patients living with Parkinson's disease

Exclusion Criteria

• Not having a diagnosis of Parkinson's disease
• Not currently or in the past a caregiver of a person with Parkinson's disease
• Not currently providing care to patients with Parkinson's disease
• Inability to complete the survey in English or Spanish
• Inability to provide informed consent

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Depressive Symptoms	Baseline	Depressive symptoms will be measured by Patient Health Questionnaire nine items, with higher scores indicating a higher frequency of depressive symptoms
Parkinson's Disease Symptoms	Baseline	Severity of Parkinson's Disease will be measured by Movement Disorder Society Unified Parkinson's Disease Rating Scale Parts one and two, with higher scores suggesting more severe Parkinson's disease symptoms
Cultural Competency of Health Care Providers	Baseline	Cultural competency is measured by Lesbian, Gay, Bisexual, Transgender Development of Clinical Skills Scale eighteen items, with higher scores indicating higher levels of clinical preparedness and less prejudicial attitudinal awareness regarding LGBT patients
Health-related quality of life	Baseline	Quality of Life is measured by Parkinson's Disease Quality of Life Questionnaire Summary Index eight items, with higher scores indicating worse quality of life
Cognition	Baseline	Cognition is measured by Telephone Interview for Cognitive Status nine items, with lower scores indicating potential cognitive impairment
Caregiver Burden	Baseline	Caregiver Burden is measured by Zarit Caregiver Burden Inventory twelve items, with higher scores representing more burden

Trial Locations

Locations (1)

University of Nevada, Las Vegas; 🇺🇸 Las Vegas, Nevada, United States