Documenting an epidemic of suffering: low health-related quality of life among transgender youth
To quantify HRQOL of TGN patients using the PedsQL 4.0 generic core scales, and to compare reported HRQOL of TGN adolescents with published data from comparison populations.
Transgender children and adolescents (N = 142; 68% natal females) ages 6–23 years (M = 15.9, SD = 3.7) attending an outpatient clinic for TGN care at an academic pediatric hospital and caregivers of children and adolescents (N = 95) completed the PedsQL 4.0 generic core scales. Scores were compared with published scores for healthy adolescents and adolescents with 10 chronic diseases.
TGN youth reported significantly lower overall HRQOL (more than twice the clinically meaningful difference) compared to youth without chronic disease. Total self-reported TGN HRQOL (M(SD), 65.72(17.40)) was lower than all chronic disease comparison groups except for rheumatology and cerebral palsy. TGN youth reported physical functioning (M(SD), 75.33(22.87)) lower than or similar to chronically ill comparisons, but higher than rheumatology and cerebral palsy groups. Psychosocial functioning (M(SD), 59.87(17.83)) was lower than all comparison samples and similar to youth with cerebral palsy. Results were similar for parent proxy-reports of TGN youth HRQOL (LS means: 68.75; 95% CI 65.87–71.61 vs 66.16; 95% CI 62.87–69.45; p = 0.12).
TGN youth reported low HRQOL across all domains; most were significantly lower than healthy peers or peers with chronic diseases. Clinicians should understand the magnitude of TGN youth’s low HRQOL and offer them and their caregivers resources to maximize their ability to achieve their full potential for healthy and productive lives.
KeywordsQuality of life Transgender Pediatric Adolescent
The authors gratefully acknowledge the assistance of Katrina Lewis, Tonara Connelly, Reuben Battely, Jennifer Jeffries, Kanzie Hitzeroth, Gail Pyne-Geithman, Michael Seid, Evelyn Heflin, Alison Kissling, and partial funding from the CCHMC Academic and Research Council, and the authors’ Divisions.
Compliance with ethical standards
Conflict of interest
All authors declare that they have no conflict of interest.
This study was approved by the instituion's Institutional Review Board. A waiver of informed consent was granted becuase the data were routinely collected in clinc and their inclusion in this study presneted no more than minimal risk and involved no procedure for whcih written consent is normally required outside of the research context. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent was not obtained because deidentified data, collected in the course of routine clinical care, was used for the analyses described in this article.
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