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The purpose of this study is to identify the health and healthcare needs of LGBTQIA+ and non LGBTQIA+ communities living with Parkinson's disease.
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| LGBTQIA+ Persons living with Parkinson's Disease | 125 LGBTQIA+ persons living with Parkinson's Disease will be asked to do a 45-minute phone survey. | ||
| Non- LGBTQIA+ Persons living with Parkinson's Disease | 125 Non- LGBTQIA+ persons living with Parkinson's Disease will be asked to do a 45- minute phone survey. | ||
| LGBTQIA+ caregivers of people living with Parkinson's Disease | 125 LGBTQIA+ caregivers of people living with Parkinson's Disease will do a 45-minute phone survey. | ||
| Non- LGBTQIA+ caregivers of people living with Parkinson's Disease | 125 non- LGBTQIA+ caregivers of people living with Parkinson's Disease will do a 45-minute phone survey. | ||
| Health care providers of people living with Parkinson's Disease | 100 health care providers of people living with Parkinson's Disease will complete a 45-minute online survey. |
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| Measure | Description | Time Frame |
|---|---|---|
| Depressive Symptoms | Depressive symptoms will be measured by Patient Health Questionnaire nine items, with higher scores indicating a higher frequency of depressive symptoms | Baseline |
| 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 |
| 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 |
| Cognition | Cognition is measured by Telephone Interview for Cognitive Status nine items, with lower scores indicating potential cognitive impairment | Baseline |
| Caregiver Burden | Caregiver Burden is measured by Zarit Caregiver Burden Inventory twelve items, with higher scores representing more burden | Baseline |
| 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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Inclusion Criteria:
Exclusion Criteria:
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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.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Jason Flatt, PhD | Contact | 702-895-5586 | jason.flatt@unlv.edu |
| Name | Affiliation | Role |
|---|---|---|
| Jason Flatt, PhD | University of Nevada, Las Vegas | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of Nevada, Las Vegas | Recruiting | Las Vegas | Nevada | 89154 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 34088617 | Background | 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. | |
| 33616625 | Background | 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. |
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| ID | Term |
|---|---|
| D010300 | Parkinson Disease |
| ID | Term |
|---|---|
| D020734 | Parkinsonian Disorders |
| D001480 | Basal Ganglia Diseases |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
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| Background | 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. |
| D009422 | Nervous System Diseases |
| D009069 | Movement Disorders |
| D000080874 | Synucleinopathies |
| D019636 | Neurodegenerative Diseases |