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

Perspectives on Healthcare Access and Equity of People With Parkinson's Disease Identifying as Lesbian, Gay, Bisexual, Transgender, Questioning, Intersex, or Two-spirit

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.

Study Overview

• Status: Recruiting
• Conditions: Parkinson Disease; Sexual Orientation
• Intervention / Treatment: Other: Individual interviews; Other: Focus Groups; Other: National Survey

Detailed Description

This mixed-methods study has a qualitative study component (1) and a quantitative study component (2):

Component 1) using a phenomenological inductive approach and Grounded Theory methodology the investigators will find and build themes from semi-structured interviews and focus groups with a) LGBTQ+ and non-LGBTQ+ individuals with PD, b) their care partners, and c) physicians to identify the experiences and perspectives on their health care and participation in research.

Component 2) survey development informed by results of Component 1, national distribution, and analysis of LGBTQ+ and non-LGBTQ+ people with PD, their caregivers and physicians, on barriers and access to health and disease information, healthcare delivery and participation in research.

The investigators plan to recruit 10 LGBTQ+ individuals with PD, 10 Non-LGBTQ+ individuals with PD, 10 care partners, and 10 healthcare providers for individual interviews, and 50 LGBTQ+ older adults with PD and care partners for focus groups consisting of 6-8 individuals each. For the national electronic survey investigators estimate needing a the sample size of approximately 380 responses calculated using a 95% confidence level (Z score=1.96), a standard deviation of .5, a 5% margin of error, and a population of 30,000. Purposive and Snowball sampling methods (nonprobability sampling) will be used.

• Study Type: Observational
• Enrollment (Anticipated): 90

Contacts and Locations

• Study Contact: Name: Tara L McIsaac, PT, PhD; Phone Number: 602-812-4582; Email: TaraMcIsaac@creighton.edu
• Study Contact Backup: Name: Katy Sutton, DPT PhD MPH; Email: KatySutton@creighton.edu

Study Locations

• United States
  • Arizona
    • Phoenix, Arizona, United States, 85012
      • Recruiting
      • Creighton University Phoenix
      • Contact: Tara L McIsaac, PT, PhD; Phone Number: 602-812-4582; Email: TaraMcIsaac@creighton.edu
      • Contact: Katy Sutton, DPT PhD MPH; Email: KatySutton@creighton.edu

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Child; Adult; Older Adult
• Accepts Healthy Volunteers: Yes
• Genders Eligible for Study: All

• 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.

Description

Inclusion Criteria:

• 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+

Exclusion Criteria:

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

Study Plan

How is the study designed?

Number of groups / cohorts

4

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
LGBTQ+_PD; Individuals who identify as LGBTQ+ and are diagnosed with PD	Other: Individual interviews; One on One interviews by Zoom video conferencing, < 2 hours in duration; Other: Focus Groups; Focus Groups discussions by Zoom video conferencing, < 2 hours in duration; Other: National Survey; Survey conducted online and distributed nationally
Non-LGBTQ_PD; Individuals who identify as non-LGBTQ+ and are diagnosed with PD	Other: Individual interviews; One on One interviews by Zoom video conferencing, < 2 hours in duration; Other: Focus Groups; Focus Groups discussions by Zoom video conferencing, < 2 hours in duration; Other: National Survey; Survey conducted online and distributed nationally
Care Partner; Individuals who are Care Partners of individuals with PD	Other: Individual interviews; One on One interviews by Zoom video conferencing, < 2 hours in duration; Other: Focus Groups; Focus Groups discussions by Zoom video conferencing, < 2 hours in duration; Other: National Survey; Survey conducted online and distributed nationally
Health Care Provider; Health Care Providers who provide service to people with PD	Other: Individual interviews; One on One interviews by Zoom video conferencing, < 2 hours in duration; Other: Focus Groups; Focus Groups discussions by Zoom video conferencing, < 2 hours in duration; Other: National Survey; Survey conducted online and distributed nationally

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
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

Collaborators and Investigators

• Sponsor: Creighton University
• Investigators: Principal Investigator: Tara L McIsaac, PT, PhD, Creighton University

Study record dates

Study Major Dates

• Study Start (Actual): October 18, 2022
• Primary Completion (Anticipated): October 1, 2023
• Study Completion (Anticipated): October 1, 2024

Study Registration Dates

• First Submitted: August 12, 2022
• First Submitted That Met QC Criteria: August 12, 2022
• First Posted (Actual): August 16, 2022

Study Record Updates

• Last Update Posted (Actual): February 1, 2023
• Last Update Submitted That Met QC Criteria: January 30, 2023
• Last Verified: January 1, 2023

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Parkinsonian Disorders; Basal Ganglia Diseases; Movement Disorders; Synucleinopathies; Neurodegenerative Diseases; Parkinson Disease
• Other Study ID Numbers: 2003114-01

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No