Gender Health QOL

K
Kelly Donahue

Primary Investigator

Enrolling By Invitation
14 years - 18 years
Transgender
Phase N/A
250 participants needed
1 Location

Brief description of study

What is the purpose of this study?
Youth who identify as transgender or gender diverse often face an overwhelming number of challenges to their overall health and emotional well-being, including experiences of discrimination, rejection, or lack of access to healthcare services. 
 
The multidisciplinary Gender Health Program at Riley Hospital for Children was developed in 2016 with the goal of providing an affirming environment in which families can access needed medical and psychological support. 
 
This study will explore patients’ and caregivers’ satisfaction with services provided by our team as well as their quality of life after receiving care in our program, enabling us to adapt our approach to care in order to best meet the needs of this vulnerable and under-served pediatric population.
 
THIS STUDY IS ENROLLING BY INVITATION ONLY - Subjects will include patients and caregivers of patients who have received care in the gender health clinic within the past two years (identified via billing records) as well as those initiating care between the survey launch and approximately 11/30/21 (identified via clinic schedules).  Patients and caregivers initiating care within the study timeframe will be contacted for recruitment approximately 1 month after their initial visit to the clinic and those agreeing to participate will complete a baseline survey at that time, with their follow-up survey to be completed 4 months later (i.e. approximately 5 months after initiating services).

Detailed description of study

What will happen during the study?
  • Via online survey, this study aims to (1) evaluate patient and parent satisfaction with the services provided by our multidisciplinary gender healthcare team, (2) assess unmet needs in our clinical service as well as the larger Riley system, and (3) examine whether receipt of services in our program is associated with improvements in quality of life for youth and their caregivers.
  • All subjects will complete online surveys at two time points (survey baseline and 4-month follow-up). 
  • Each survey will take approximately 20-30 minutes to complete. 
 
 

Eligibility of study

You may be eligible for this study if you meet the following criteria:

  • Conditions: Transgender, Gender diverse, Riley
  • Age: 14 years - 18 years
  • Gender: Transgender

Inclusion Criteria:
  • Patients ages 14 and older who (1) have been seen for at least one billed visit in the adolescent medicine or pediatric endocrinology gender health clinics within the past two years (based on date of survey launch) or (2) are seen for their first gender health clinic visit between the time of the survey launch and approximately 11/30/21.
  • Legal guardians/caregivers of patients under 18 who (1) have been seen for at least one billed visit in the adolescent medicine or pediatric endocrinology gender health clinics within the past two years (based on date of survey launch) or (2) are seen for their first gender health clinic visit between the time of the survey launch and 
Exclusion Criteria:
  • Patients or caregivers would not be eligible to participate if any of the above inclusion criteria are not met.

Online study
Updated on 11 Feb 2025. Study ID: PADO-IIR-GENDER-HEALTH-QOL, 11419
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