Clinical trial NCT05556993: Parkinson's Research With Inclusion, Diversity and Equity
Official title: Parkinson's Research With Inclusion, Diversity and Equity
Study type: OBSERVATIONAL
Overall status: UNKNOWN
Conditions: Parkinson Disease
Keywords: Parkinson's Disease
Caregiver
Health care provider
LGBTQIA+
Lead sponsor: University of Nevada, Las Vegas
Sponsor class: OTHER
First posted: 2022-09-27
Enrollment: 600
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Observational model: ECOLOGIC_OR_COMMUNITY
Time perspective: CROSS_SECTIONAL
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Study population includes individuals aged 18 and older who identify as lesbian, gay, bisexual, transgender, queer, intersex and/or another identity (LGBTQIA+) and non-LGBTQIA+ persons living with Parkinson's disease and their caregivers, as well as health care professional, including physicians, physician assistants, nurse practitioners, psychologists, physical or occupational therapists, registered nurses, social workers, and others, who provide care to persons living with Parkinson's disease.

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.

Eligibility criteria: 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

Primary outcomes:
measure: Depressive Symptoms
timeFrame: Baseline
measure: Parkinson's Disease Symptoms
timeFrame: Baseline
measure: Health-related quality of life
timeFrame: Baseline
measure: Cognition
timeFrame: Baseline
measure: Caregiver Burden
timeFrame: Baseline
measure: Cultural Competency of Health Care Providers
timeFrame: Baseline
Secondary outcomes:
Other outcomes:
Locations:
city: Las Vegas
country: United States
facility: University of Nevada, Las Vegas
state: Nevada
Study officials:
affiliation: University of Nevada, Las Vegas
name: Jason Flatt, PhD
role: PRINCIPAL_INVESTIGATOR
References:
citation: 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.
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.
citation: 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.