Parkinson Disease
Conditions
Keywords
Parkinson's Disease, Caregiver, Health care provider, LGBTQIA+
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.
Interventions
None listed
Sponsors
University of Nevada, Las Vegas
Study design
Observational model
ECOLOGIC_OR_COMMUNITY
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Depressive Symptoms | 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 | 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 |
| Health-related quality of life | 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 | Baseline | Cognition is measured by Telephone Interview for Cognitive Status nine items, with lower scores indicating potential cognitive impairment |
| Caregiver Burden | Baseline | Caregiver Burden is measured by Zarit Caregiver Burden Inventory twelve items, with higher scores representing more burden |
| Cultural Competency of Health Care Providers | 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 |
Countries
United States
Contacts
Primary ContactJason Flatt, PhD
Outcome results
None listed