Parkinson's Research With Inclusion, Diversity and Equity

Study Overview
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Brief Summary
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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.

Detailed Description
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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.

Official Title
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Parkinson's Research With Inclusion, Diversity and Equity

Conditions
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Parkinson Disease

Participation Criteria
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Eligibility Criteria
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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

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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Accepts Healthy Volunteers

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| LGBTQIA+ Persons living with Parkinson's Disease<br>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<br>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<br>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<br>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<br>100 health care providers of people living with Parkinson's Disease will complete a 45-minute online survey. | |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | 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 | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Parkinson's Disease, Caregiver, Health care provider, LGBTQIA+