Perspectives on Healthcare Access and Equity of People With Parkinson's Disease Identifying as LGBTQ+

NCT05502055 | Suspended

• 1 other identifier: 2003114-01
• Study Type: observational
• Target: 90
• Locations: 1 country
• Sites: 1

Brief Summary

Study Rationale: Older adults who identify as lesbian, gay, bisexual, transgender, or queer (LGBTQ+) have worse health than non-LGBTQ+ older adults. They and their care partners face greater barriers to getting healthcare and support from friends and family. This is because of lifelong stigma, discrimination, and isolation often separated from their families. Parkinson disease (PD) is a disease that usually appears in older age, so there may be many LGBTQ+ elders with PD, but there is currently no information on how people with PD who are LGBTQ+ are coping with their disease and aging. This study will begin to clarify their needs. Hypothesis/Research Question: What are the experiences and perspectives of LGBTQ+ people living with PD, their care partners, and physicians managing people with PD? Study Design: The investigators will interview 20 people with PD, half who identify as LGBTQ+ and half who are not. The investigators will also interview their care partners and physicians who treat people with PD. From the responses to the interview questions, investigators will create a survey that will be sent to people across the country. Impact on Diagnosis/Treatment of Parkinson's Disease: By understanding what LGBTQ+ people with PD need, and what ideas they have for improving their healthcare, better systems for meeting their needs can be built. Next Steps for Development: With this understanding, future work can focus on educating healthcare providers and clinics to improve the ways they talk with and treat LGBTQ+ people with PD.

Conditions

Parkinson Disease; Sexual Orientation

Outcome Measures

Primary Outcomes (2)

• Themes of Lived Experience Accessing Health Care Services

  Inductive and iterative thematic analysis of transcripts

  2 hours

• Themes of Lived Experience Providing Health Care Services to LGBTQ+ people with PD

  Inductive and iterative thematic analysis of transcripts

  2 hours

Study Arms (4)

LGBTQ+_PD

Individuals who identify as LGBTQ+ and are diagnosed with PD

Other: Individual interviews; Other: Focus Groups; Other: National Survey

Non-LGBTQ_PD

Individuals who identify as non-LGBTQ+ and are diagnosed with PD

Other: Individual interviews; Other: Focus Groups; Other: National Survey

Care Partner

Individuals who are Care Partners of individuals with PD

Other: Individual interviews; Other: Focus Groups; Other: National Survey

Health Care Provider

Health Care Providers who provide service to people with PD

Other: Individual interviews; Other: Focus Groups; Other: National Survey

Interventions

Individual interviews OTHER

One on One interviews by Zoom video conferencing, \< 2 hours in duration

Care Partner; Health Care Provider; LGBTQ+_PD; Non-LGBTQ_PD

Focus Groups OTHER

Focus Groups discussions by Zoom video conferencing, \< 2 hours in duration

Care Partner; Health Care Provider; LGBTQ+_PD; Non-LGBTQ_PD

National Survey OTHER

Survey conducted online and distributed nationally

Care Partner; Health Care Provider; LGBTQ+_PD; Non-LGBTQ_PD

Eligibility Criteria

• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Individuals from across the United States, from urban and rural areas and across diverse socioeconomic environments, with online access for a 2-hour period on a single day.

You may qualify if:

• Diagnosed with PD
• Care partner of someone diagnosed with PD
• Health Care Provider providing services to individuals with PD
• Identify as LGBTQ+
• Identify as Non-LGBTQ+

You may not qualify if:

• Non-English speaking
• Inability to communicate via video conferencing

Sponsors & Collaborators

• Creighton University: lead

Study Sites (1)

Creighton University Phoenix

Phoenix, Arizona, 85012, United States

Location

MeSH Terms

Conditions

Parkinson Disease; Sexual Behavior

Interventions

Focus Groups; Health Care Surveys

Condition Hierarchy (Ancestors)

Parkinsonian Disorders; Basal Ganglia Diseases; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Movement Disorders; Synucleinopathies; Neurodegenerative Diseases; Behavior

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health; Surveys and Questionnaires; Health Services Research; Health Planning; Health Care Economics and Organizations

Study Officials

• Tara L McIsaac, PT, PhD

  Creighton University

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Professor

Study Record Dates

• First Submitted: August 12, 2022
• First Posted: August 16, 2022
• Study Start: October 18, 2022
• Primary Completion: May 1, 2025
• Study Completion: October 1, 2025
• Last Updated: November 6, 2024

Record last verified: 2024-11

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)