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Clinical Trial Details — Status: Recruiting

Administrative data

NCT number NCT05556993
Other study ID # UNLV-2021-265
Secondary ID
Status Recruiting
Phase
First received
Last updated
Start date June 29, 2022
Est. completion date November 2024

Study information

Verified date October 2022
Source University of Nevada, Las Vegas
Contact Jason Flatt, PhD
Phone 702-895-5586
Email jason.flatt@unlv.edu
Is FDA regulated No
Health authority
Study type Observational

Clinical Trial 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.


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.


Recruitment information / eligibility

Status Recruiting
Enrollment 600
Est. completion date November 2024
Est. primary completion date April 2024
Accepts healthy volunteers Accepts Healthy Volunteers
Gender All
Age group 18 Years and older
Eligibility 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


Related Conditions & MeSH terms


Locations

Country Name City State
United States University of Nevada, Las Vegas Las Vegas Nevada

Sponsors (1)

Lead Sponsor Collaborator
University of Nevada, Las Vegas

Country where clinical trial is conducted

United States, 

References & Publications (3)

Anderson JG, Flatt JD. Characteristics of LGBT caregivers of older adults: Results from the national Caregiving in the US 2015 survey. Journal of Gay & Lesbian Social Services. 2018;30(2):103-116.

Lin CR, Rosendale N, Deeb W. Expanding sexual and gender minority research in movement disorders: More than awareness and acceptance. Parkinsonism Relat Disord. 2021 Jun;87:162-165. doi: 10.1016/j.parkreldis.2021.05.019. Epub 2021 May 24. Review. — View Citation

Rosendale N, Wong JO, Flatt JD, Whitaker E. Sexual and Gender Minority Health in Neurology: A Scoping Review. JAMA Neurol. 2021 Jun 1;78(6):747-754. doi: 10.1001/jamaneurol.2020.5536. — View Citation

Outcome

Type Measure Description Time frame Safety issue
Primary Depressive Symptoms Depressive symptoms will be measured by Patient Health Questionnaire nine items, with higher scores indicating a higher frequency of depressive symptoms Baseline
Primary Parkinson's Disease Symptoms 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 Baseline
Primary Health-related quality of life 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 Baseline
Primary Cognition Cognition is measured by Telephone Interview for Cognitive Status nine items, with lower scores indicating potential cognitive impairment Baseline
Primary Caregiver Burden Caregiver Burden is measured by Zarit Caregiver Burden Inventory twelve items, with higher scores representing more burden Baseline
Primary Cultural Competency of Health Care Providers 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 Baseline
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