Health Related Quality of Life of Transgender Adolescents Undergoing Hormonal Transition or Elective Pubertal Delay

BACKGROUND: Research concerning the health and well-being of gender non-conforming and transgender adolescents following pubertal suppression and cross-sex hormone administration has grown dramatically in recent years, providing further evidence supporting a gender-affirming approach to this vulnerable population. Improvement in psychological functioning has been demonstrated in both transgender male and transgender female adolescents following these mentioned medical interventions. Further research is necessary to demonstrate whether a gender-affirming medical approach improves health-related quality of life, which includes not only psychological functioning but physical and social functioning as well. The gender-affirming medical approach also relies heavily on self-reported observations from adolescents, which has come under scrutiny by critics who believe adolescents are incapable of making semi-permanent and permanent gender affirming medical decisions. More research is needed to compare adolescent observations of their quality of life to the observations of their parents/guardians as an index of reliability of reported behaviors and feelings. This will further inform how medical and mental health professionals weigh adolescent and guardian reports in the ongoing debate regarding the appropriate age for cross-sex hormonal transition in gender non-conforming and transgender adolescents. OBJECTIVE: Following medical intervention (pubertal suppression and later cross-sex hormone initiation), adolescents will report a significant increase in their health-related quality of life from their self-reported baseline prior to intervention. METHODS: Adolescents experiencing gender dysphoria were recruited to participate in this study beginning at their intake into GENECIS, a center located in Dallas, Texas, specializing in interdisciplinary gender affirming care of this population. At intake, adolescents agreeable to participate in this study included 108 trans-males (natal female, gender identity male) and 71 trans-females (natal male, gender identity female) as well as their caregivers. All were administered the PedsQL, a validated instrument that quantifies perceived general self-reported and parent-reported quality of life in several core domains. This tool, first developed to assess baseline risk, health status, and outcomes of pediatric cancer patients has since been validated in multiple chronic health conditions. The PedsQL was administered again to adolescents and parents which at one-year follow up, which at the time included 71 adolescents and 90 parents. Paired t-test was performed on baseline and one year follow up PedsQL scores for this group, comparing the gender affirming care model to the gender affirming care model plus medical intervention (cross-sex hormones or pubertal delay, n=56). The PedsQL Family Impact tool was also administered to parents of transgender adolescents at initial intake and one year follow up (n=94). This tool assists in analyzing the health related quality of life of the parents and family when considering the stresses caused by raising a transgender adolescent. RESULTS: The initial assessment provided results regarding baseline QL of transgender adolescents. Out of 179 adolescents, 160 identified as White, 5 African American, 1 American Indian/Alaskan Native, 4 Asian, and 9 Unknown. Ethnically, 15 identifed as Hispanic or Latino, with 164 identifying as Non-Hispanic or Latino. Domain means for all adolescents were as follows, with a score of 100 as a perfect score: Physical functioning 77.98, Emotional functioning 56.92, Social functioning 70.81, School functioning 63.88, Psychosocial health summary score 64.12, and Total Score 68.95. Trans males (n=108) had the following domain means: Physical functioning 74.26, Emotional functioning 53.01, Social functioning 68.01, School functioning 60.46, Psychosocial health 60.89, Total score 65.53. Trans females (n=71) had the following domain means: Physical functioning 83.65, Emotional functioning 62.87, Social functioning 75.07, School functioning 69.08, Psychosocial health 69.03, Total score 74.15. Patients who completed both an initial PedsQL assessment and one year reassessment (n=71) provided data for a Paired T Test (95% CI) with the following results: Physical functioning Initial 80.76, Year 1 78.97, p=.304; Emotional functioning Initial 55.58, Year 1 64.03 p=.004*; Social functioning initial 72.04, Year 1 77.82, p=.006*; School functioning Initial 65.07, Year 1 67.68 p=.396; Psychosocial 64.62, Year 1 70.49, p=.004*; Total score Initial 70.25, Year 1 73.41, p=.065. Of this paired data, Trans Males (n=45) demonstrated the following results: Physical functioning Initial 76.42, Year 1 76.40, p=.99; Emotional functioning Initial 52.67, Year 1 61.02 p=.01*; Social functioning Initial 70.78, Year 1 75.00, p=.12; School functioning Initial 63.44, Year 1 63.56 p=.97; Psychosocial Initial 62.89, Year 1 67.18, p=.06; Total score Initial 67.58, Year 1 70.36, p=.16. Trans Females (n=26) demonstrated the following results: Physical functioning Initial 88.27, Year 1 83.42, p=.17; Emotional functioning Initial 60.62, Year 1 69.23 p=.14; Social functioning Initial 74.23, Year 1 82.69, p=.01*; School functioning Initial 67.88, Year 1 74.81 p=.17; Psychosocial Initial 67.62, Year 1 76.23, p=.03*; Total score Initial 74.88, Year 1 78.69, p=.24. Patients who completed both an initial PedsQL assessment, began cross-sex hormones or elective pubertal delay following initial assessment, and completed a one year reassessment (n=56) provided data for a Paired T Test (95% CI) with the following results: Physical functioning Initial 78.56, Year 1 79.84, p=.53; Emotional functioning Initial 55.27, Year 1 66.71 p=.0004*; Social functioning Initial 69.46, Year 1 77.21, p=.003*; School functioning Initial 63.39, Year 1 70.55 p=.024*; Psychosocial Initial 63.18, Year 1 71.39, p=.0001*; Total score Initial 68.55, Year 1 74.30, p=.002*. Of this paired data, Trans Males (n=38) demonstrated the following results: Physical functioning Initial 73.92, Year 1 77.29, p=.17; Emotional functioning Initial 50.53, Year 1 64.50 p=.00003*; Social functioning Initial 69.34, Year 1 76.29, p=.04*; School functioning Initial 62.11, Year 1 68.55 p=.09; Psychosocial Initial 61.34, Year 1 69.76, p=.0009*; Total score Initial 65.71, Year 1 72.39, p=.002*. Trans Females (n=18) demonstrated the following results: Physical functioning Initial 88.39, Year 1 85.22, p=.38; Emotional functioning Initial 65.28, Year 1 71.39 p=.39; Social functioning initial 69.72, Year 1 79.17, p=.02*; School functioning Initial 66.11, Year 1 75.00 p=.12; Psychosocial Initial 67.06, Year 1 74.83, p=.06; Total score Initial 74.57, Year 1 78.33, p=.26. Parents who also completed an initial PedsQL assessment (parent proxy) and a one year reassessment (n=90) provided data for a Paired T Test (95% CI) with the following results: Physical functioning Initial 78.74, Year 1 81.47 p=.179; Emotional functioning Initial 59.33, Year 1 62.81 p=.08; Social functioning initial 71.23, Year 1 76.78, p=.02*; School functioning Initial 69.18, Year 1 72.36 p=.28; Psychosocial Initial 66.84, Year 1 71.02, p=.03*; Total score Initial 70.96, Year 1 74.59, p=04*. Regarding scores on the PedsQL Family Impact assessment, a Paired T Test (n=94) had the following results: Physical functioning Initial 77.95, Year 1 79.61 p=.49; Emotional functioning Initial 65.59, Year 1 71.01 p=.02*; Social functioning initial 75.31, Year 1 80.18, p=.07; Cognitive Functioning Initial 78.78, Year 1 80.43 p=.44; Communication Health Summary Initial 63.57, Year 1 68.44, p=.047*; Worry Initial 49.34, Year 1 58.55 p=.001*; Daily Activities Initial 74.76, Year 1 80.73, p=.09; Family Relationships Initial 69.73, Year 1 73.56, p= .001*; Parent HRQL Summary Score Initial 74.63, Year 1 77.82, p= .001*; Family Functioning Summary 71.68, Year 1 76.31, p=.178; Total Score Initial 69.70, Year 1 74.70, p=.12. CONCLUSION: By focusing on functionality as demonstrated by the PedsQL, this research has demonstrated that transgender adolescents achieve a significant improvement across multiple QOL domains via medical care rooted in a gender-affirming approach, but adolescents achieved the greatest gains in QOL scores when medical therapy in the form of cross-sex hormones or pubertal suppression was introduced. Trans males had greater improvements in QOL scoring, possibly explained the larger sample size of trans males in the GENECIS clinic, the faster onset of desired side effects of testosterone administration versus estrogen, and the larger percentage of trans males on cross-sex hormones in versus pubertal blockers alone. The similarities in how adolescents reported their quality of life compared to the reported observations of their guardian suggest parents of adolescents at GENECIS can accurately estimate the impact gender dysphoria has on their child's life, and adolescent self-reporting is as accurate to parental proxy. This potentially has great importance in regard to informed decision making, particularly age at which cross-sex hormones are administered. The PedsQL Family Impact instrument provided strong data suggesting that not only do adolescents benefit from receiving care from a gender affirming center (as demonstrated by the PedsQL tool) but that the family unit and the parent also achieve an improved quality of life. Based on these findings, we conclude that this early research on QOL in transgender adolescents continues to support administration of cross-sex hormones and pubertal blockade and consider lowering the age of transition below sixteen years of age as improvement in QOL of the adolescent and family unit is demonstrable and desirable.