Presenter Status

Fellow

Abstract Type

Research

Primary Mentor

Anna M. Egan

Christine N. Moser

Start Date

2-5-2022 12:30 PM

End Date

2-5-2022 12:45 PM

Presentation Type

Oral Presentation

Description

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Background: Access to gender-affirming medical care (GAMC) for transgender/gender diverse (TGD) individuals is one of the most pressing social justice issues of our time. Research has begun to identify the benefits of GAMC. However, little is known about the healthcare needs of TGD youth, especially those who discontinue GAMC. Available literature lacks clear and consistent terms to define TGD youth who stop care. Further, a significant criticism of current research is the assumption that discontinuing care is equivalent to detransitioning. There are no studies, to our knowledge, that differentiate between TGD youth who choose to detransition from those who discontinue care due to factors unrelated to gender dysphoria. It is critical to understand why TGD youth discontinue care to inform healthcare guidelines and recently proposed state legislation prohibiting access to GAMC for TGD youth and advise parents considering providing consent for GAMC.

Objectives/Goal: The current study addresses these critical gaps in the literature by reporting rates and purpose of discontinuation of care, including detransition rates, and reporting the basic characteristics, wellbeing, and medical status of TGD youth who discontinue medical care compared to those who continue GAMC.

Methods/Design: Participants include 829 TGD youth who were at least eight years old when they presented for care to Children’s Mercy Kansas City’s Gender Pathways Services (GPS) clinic between 2014 and 2021. Medical records review was completed for all participants to gather demographic (i.e., medical record number, contact information, caregiver name, date of birth, sex assigned at birth, ethnicity, insurance, and zip code) and medical (i.e., patient’s height, weight, and listed diagnoses after their final GPS appointment, as well as the date of their first and last appointment and any future appointments scheduled) data. If a patient had not been seen for one year and had no future appointments scheduled, we assumed that the patient had discontinued services for the purposes of this study. If a patient had discontinued services, the purpose or reason for discontinuing services was gathered from the medical record (e.g., transition to adult care, relocation). If a reason for discontinuing care was not identified, the patient and their caregiver were invited to participate in a virtual interview and complete questionnaires via Teams.

Results: Preliminary results of the comprehensive medical record reviews are reported as data collection via virtual visits is ongoing, and results will be included in the final presentation. Overall, 37% (N= 304) of patients discontinued care in the GPS clinic after their initial visit primarily due to transitioning to adult care (49.4%, N= 84) or moving out of state (17.6%, 30). Eight (4.7%) patients reported detransitioning, and 26 (15.3%) discontinued care as they, or their families, were undecided about pursuing GAMC. A reason for discontinuing care was not identified in 41% (N= 124) of patients.

Conclusions: Preliminary results support that TGD youth discontinuation of pediatric GAMC does not always indicate a change to one’s gender identity. Results will shed light on mental and physical health differences between TGD youth who continue care and those who discontinue care.

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May 2nd, 12:30 PM May 2nd, 12:45 PM

A Mixed-Methods Examination of Transgender Youth Desistence

Watch recording of live presentation

Background: Access to gender-affirming medical care (GAMC) for transgender/gender diverse (TGD) individuals is one of the most pressing social justice issues of our time. Research has begun to identify the benefits of GAMC. However, little is known about the healthcare needs of TGD youth, especially those who discontinue GAMC. Available literature lacks clear and consistent terms to define TGD youth who stop care. Further, a significant criticism of current research is the assumption that discontinuing care is equivalent to detransitioning. There are no studies, to our knowledge, that differentiate between TGD youth who choose to detransition from those who discontinue care due to factors unrelated to gender dysphoria. It is critical to understand why TGD youth discontinue care to inform healthcare guidelines and recently proposed state legislation prohibiting access to GAMC for TGD youth and advise parents considering providing consent for GAMC.

Objectives/Goal: The current study addresses these critical gaps in the literature by reporting rates and purpose of discontinuation of care, including detransition rates, and reporting the basic characteristics, wellbeing, and medical status of TGD youth who discontinue medical care compared to those who continue GAMC.

Methods/Design: Participants include 829 TGD youth who were at least eight years old when they presented for care to Children’s Mercy Kansas City’s Gender Pathways Services (GPS) clinic between 2014 and 2021. Medical records review was completed for all participants to gather demographic (i.e., medical record number, contact information, caregiver name, date of birth, sex assigned at birth, ethnicity, insurance, and zip code) and medical (i.e., patient’s height, weight, and listed diagnoses after their final GPS appointment, as well as the date of their first and last appointment and any future appointments scheduled) data. If a patient had not been seen for one year and had no future appointments scheduled, we assumed that the patient had discontinued services for the purposes of this study. If a patient had discontinued services, the purpose or reason for discontinuing services was gathered from the medical record (e.g., transition to adult care, relocation). If a reason for discontinuing care was not identified, the patient and their caregiver were invited to participate in a virtual interview and complete questionnaires via Teams.

Results: Preliminary results of the comprehensive medical record reviews are reported as data collection via virtual visits is ongoing, and results will be included in the final presentation. Overall, 37% (N= 304) of patients discontinued care in the GPS clinic after their initial visit primarily due to transitioning to adult care (49.4%, N= 84) or moving out of state (17.6%, 30). Eight (4.7%) patients reported detransitioning, and 26 (15.3%) discontinued care as they, or their families, were undecided about pursuing GAMC. A reason for discontinuing care was not identified in 41% (N= 124) of patients.

Conclusions: Preliminary results support that TGD youth discontinuation of pediatric GAMC does not always indicate a change to one’s gender identity. Results will shed light on mental and physical health differences between TGD youth who continue care and those who discontinue care.

 

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