Parkinson's Research With Inclusion, Diversity and Equity
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 入组人数
- 600
- 试验地点
- 1
- 主要终点
- Depressive Symptoms
研究概览
简要总结
The purpose of this study is to identify the health and healthcare needs of LGBTQIA+ and non LGBTQIA+ communities living with Parkinson's disease.
详细描述
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.
研究设计
- 研究类型
- Observational
- 观察模型
- Ecologic Or Community
- 时间视角
- Cross Sectional
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Identify as LGBTQIA+ or non-LGBTQIA+
- •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
排除标准
- •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
结局指标
主要结局
Depressive Symptoms
时间窗: 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
时间窗: 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
时间窗: 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
时间窗: 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
时间窗: Baseline
Cognition is measured by Telephone Interview for Cognitive Status nine items, with lower scores indicating potential cognitive impairment
Caregiver Burden
时间窗: Baseline
Caregiver Burden is measured by Zarit Caregiver Burden Inventory twelve items, with higher scores representing more burden
次要结局
未报告次要终点