Two-Year Follow-Up Study of Health-Related Quality of Life Among Transgender and Gender Expansive Youth Receiving Gender-Affirming Care

Abstract

Purpose:

To examine changes in health-related quality of life (HRQOL), this 2-year follow-up study reassessed the HRQOL of transgender and gender expansive (TG/GE) young people enrolled in a patient registry at the Gender Wellness Center (GWC) in upstate New York.

Methods:

Registry patients had to have a gender-affirming care follow-up visit at the GWC within a 2 year window (+6 months) of their baseline survey to complete follow-up. Youth <18 years of age completed the Child Health Questionnaire-Child Form 87 (CHQ-CF87); youth >18 years of age completed the Short Form-36v2 (SF-36v2). We analyzed change from baseline to follow-up for 11 CHQ-CF87 subscales and 8 SF-36v2 subscales. We compared follow-up HRQOL results to U.S. population standards. We abstracted receipt of gender-affirming care from GWC electronic medical records.

Results:

Among the 173 patients who completed HRQOL assessments at baseline, 108 completed follow-up (62% response rate) from May 2019 to March 2022. The mean age for those completing the CHQ-CF87 was 14.6±2.2 years (range 10–17) and for the SF-36v2 was 19.7±2.3 years (range 18–24). CHQ-CF87 Behavior and Role/Social Physical Functioning subscale scores improved significantly among youth 8–17 years of age from baseline. Follow-up SF-36v2 scores for patients 18–24 years of age did not change significantly. Follow-up HRQOL mental health scores remained statistically significantly lower than U.S. population standards for both age groups.

Conclusions:

Two year follow-up HRQOL data from TG/GE youth receiving gender-affirming care improved in two domains, but did not change among young adults (>18 years of age). Mental health remains suboptimal compared to national standards.

Introduction

Transgender and gender expansive (TG/GE) youth face barriers to health care and are at high risk for poor medical and psychosocial outcomes.¹ In a large retrospective cohort study of the PEDSnet database, youth diagnosed with gender dysphoria were more likely to have a concurrent neurodevelopmental or psychiatric diagnosis, with high risk of mood disorder and anxiety.² These risks may have been exacerbated by the increase in anti-transgender legislation in the United States and the ongoing coronavirus disease 2019 (COVID-19) pandemic, both of which have adversely affected TG/GE youth.^3,4

Health-related quality-of-life (HRQOL) measures yield a broad assessment of well-being or global functioning and provide an alternative to measuring disease- or condition-specific functional impairment. Several studies have documented lower HRQOL among TG/GE adults, which improves with gender-affirming care, especially hormone therapy.^5–10 There has been no prospective study assessing HRQOL of TG/GE youth receiving gender-affirming care, although two are underway.^11,12

The paucity of prospective HRQOL research among TG/GE youth led us to re-assess the HRQOL among TG/GE youth 2 years after they enrolled in a registry at a gender-affirming clinic. We hypothesized that the receipt of gender-affirming care would improve HRQOL among TG/GE youth and lessen the gap between HRQOL subscales of TG/GE youth and U.S. population standards, which we had identified in a prior study.¹³ Our second aim was to explore how psychological well-being and social support correlate with the HRQOL among TG/GE youth and young adults. Unfortunately, the COVID-19 pandemic and increasingly anti-TG/GE political environment co-occurred during our follow-up period.^14–17 Thus, we explored whether these adverse sociopolitical events had any temporal association with HRQOL among TG/GE youth and young adults.

Methods

Study population

The Gender Wellness Clinic (GWC) is a gender-affirming clinic embedded in a family practice clinic in Oneonta, New York.¹⁸ The GWC draws youth from over 30 counties across upstate New York and nearby states, with many youth traveling hours to receive care. The GWC Pediatric Patient Registry was established in 2017 to enable systematic, in-depth study of youth served by the GWC.¹⁹ This registry aggregates electronic medical record (EMR) de-identified information about youth receiving gender-affirming care at the GWC. The overall participation rate in the registry was 89.9% (186 enrolled/207 approached) when recruitment ended in October 2019.

Our 2020 cross-sectional HRQOL study of TG/GE youth receiving gender-affirming care showed significantly poorer mental health measures when compared with the U.S. population standards.¹³ The Child Health Questionnaire-Child Form 87 (CHQ-CF87)²⁰ was used to assess the HRQOL of 141 TG/GE youth 5–17 years of age. Their CHQ-CF87 scores were significantly lower than 2015–2016 U.S. population standards and youth with two chronic conditions on all domains, except for the Role/Social Physical Functioning. This subscale measures the degree to which physical health problems limit school and friend activities.^21,22 TG/GE youth who had socially transitioned reported higher Role/Social Physical Functioning scores compared to youth who had not socially transitioned. The greatest disparities between TG/GE youth and the comparative U.S. standards were observed on the mental health subscales.

In this same study, youth 18 to 25 years of age completed the Short Form-36v2 (SF-36v2)²³ and scored significantly higher than 2009 U.S. population standards²⁴ on physical health scales, but lower on mental health component summary, including social functioning, emotional role, and mental health. Youth who had undergone gender-affirming surgery reported higher physical functioning and physical role subscale scores compared to those who had not.

This follow-up study includes patients, 8–25 years of age, receiving gender-affirming care and enrolled in the GWC Registry. Patients who completed HRQOL assessments at baseline were re-consented for follow-up HRQOL 2 years later at a regular GWC clinic visit. Patients had to have a scheduled appointment at the GWC within the 2-year window (+6 months) to be included in this study. The follow-up period occurred between May 2019 and March 2022.

HRQOL measures

Youth <18 years of age completed the CHQ-CF87²⁰ (Table 1); youth 18–25 years of age completed the SF-36v2²³ (Table 2). Scores on both surveys range from 0 to 100 with higher values indicating better HRQOL. Each of the 8 SF-36v2 domains contributes to the Physical Component Summary (PCS) and Mental Component Summary (MCS).

Table 1.

Child Health Questionnaire-Child Form 87 Health-Related Quality-of-Life Domains

Domain	Assessment
Behavior	Getting along/behavior problems relative to children of the same age
Mental health	Frequency of feelings of sadness, fear, worry, and happiness, and symptoms of mental health problems
General health perceptions	Self-perceived general health status
Physical functioning	Difficulty participating in activities due to physical health problems
Role/social emotional functioning	Difficulty participating in activities due to emotional problems (i.e., feeling sad)
Role/social behavioral functioning	Behaviors, moods, and interactions with authority figures
Role/social physical functioning	Difficulty performing schoolwork and engaging in social activities due to physical health problems
Bodily pain/discomfort	Bodily pain and discomfort
Self-esteem	Respondent's feelings about friendships, social environment, and others' perceptions
Family activities	Impact of the respondent's health and behavior on family activity restrictions
Family cohesion	General family dynamics

The CHQ-CF87 is an 87-item self-report measure of HRQOL.²⁰ Response options are ordinal scales: scores are transformed to a 0–100 scale (mean: 50; SD: ±10) with higher scores representing better QOL. Two of the 14 domains of the CHQ were not evaluated in this sample because the study utilized the child report form (CHQ-CF87) only, and not the parent-proxy reports, which include the domains “Parent Impact-Time” and “Parent Impact-Emotional.” In addition, the “Change in health” domain, that is, perceived health status relative to 1 year prior, was not included in this follow-up study due to the availability of baseline data.

Table 1 is adapted from Ref 13. Permission granted for reuse by Springer Nature. Permission to use the content in Table 1 granted by HealthActCHQ, Inc.

CHQ-CF87, Child Health Questionnaire-Child Form 87; HRQOL, health-related quality of life; SD, standard deviation.

Table 2.

Short Form-36v2 Health-Related Quality-of-Life Domains^a

Domain	Assessment
Physical functioning	Regular daily activity restrictions due to physical health
Role-physical	Frequency of problems with work and regular daily activities due to physical health
Bodily pain	Level of bodily pain experienced and its interference with normal work
General health	Self-perceived general health status, health relative to others, and expectations for health in the future
Vitality	Energy level and fatigue
Social functioning	Level of disruption caused to normal social activities by health problems
Role-emotional	Frequency of problems with work and regular daily activities due to emotional problems (i.e., depression or anxiety)
Mental health	General mental health, feelings, psychological distress and well-being

^a The Short Form-36v2^® Health Survey (SF-36v2) is a 36-item self-report measure of HRQOL consisting of eight subscales.²³ Component summary scores (MCS and PCS) can be derived from the mental and physical health subscales, respectively. Scores are transformed to a 0–100 scale (mean: 50; SD: ±10) with higher scores representing better HRQOL.

Table 2 is adapted from Ref. 13. Permission granted for reuse by Springer Nature.

MCS, Mental Component Summary; PCS, Physical Component Summary.

Psychological well-being

The World Health Organization Quality-of-Life Brief Version (WHOQOL-BREF) Psychological Domain, an abbreviated part of the WHOQOL-100, is a patient-reported outcome measure that has been validated in adolescent and young adult populations.²⁵ It includes a six-item subjective measure, scaled from 1 to 5,²⁶ which is focused on psychological well-being that includes self-esteem, body image, negative feelings, and life satisfaction.²⁷ Referring to the past 2 weeks, it includes the question, “Are you able to accept your bodily appearance?,” which may be especially salient for TG/GE youth and young adults. It also includes “How often do you have negative feelings such as blue mood, despair, anxiety, and depression?,” which was followed by a question about current receipt of mental health counseling.

Social support

The Multidimensional Scale of Perceived Social Support (MSPSS) measures perceived social support, including three subscales (family, friend, and significant other).²⁸ All 12 items are scaled from 1 to 7, with higher scores indicating greater perceived support (12–35 low, 36–60 moderate, and 61–84 high). The MSPSS has been used with diverse populations, including TG/GE people 16 to 25 years of age.²⁹

Support at school

We also gathered contextual information about the school environment, which could influence HRQOL. Survey questions included whether a patient's school had been gender affirming (Y/N) and if so, in which specific ways (e.g., access to gender-neutral bathrooms, supportive guidance, whether gender-related bullying is addressed).

Ethics

The Mary Imogene Bassett Hospital Institutional Review Board approved this study, September 2017, and provided continuing review. Subjects >18 years of age provided signed informed consent, whereas subjects <18 years of age provided assent and parents provided informed consent. This research was completed in accordance with the 2013 Declaration of Helsinki.

Database

The GWC Registry database has been described previously.¹⁹ We use the term “gender expansive” (GE) to encompass a broad range of gender expression that goes beyond the binary framework, and includes nonbinary, gender fluid, and gender diverse identities.^29,30 GE identities were examined separately as prior research suggests this group faces different levels of discrimination and gender minority stress.^31,32 In addition, GE individuals may not follow the usual medical transition path from pubertal blockers to hormones to surgery that individuals with binary identities tend to follow.

We abstracted gender identity and receipt of gender-affirming care from the EMR for all visits up to and including the time of the subject's follow-up HRQOL survey. Medical treatments included receipt of gonadotropin-releasing hormone agonists, gender-affirming hormone therapy, and surgery, as described by Kelly.⁷ Gender-affirming medical treatments were summed (+1 for each) and recorded as a range from 0 for none to 3 (the maximum number).

Data analysis

We transformed HRQOL data to a 0–100 scale, using available scoring protocols for each instrument.^22,24 We calculated mean scores for 11 domains of the CHQ-CF87 (Table 1) and 8 domains of the SF-36v2 (Table 2). To compare HRQOL scores of TG/GE youth at baseline versus follow-up, we analyzed changes in mean scores from baseline to follow-up using repeated-measures analysis of variance for within-subject effects. Mean subscale scores were compared to age-matched U.S. aggregate standards using one-sample z-tests (CHQ-CF87) to compare HRQOL scores of TG/GE youth to 2015–2016 U.S. population standards and youth with two chronic conditions. A comparison of the follow-up SF-36v2 results to 2009 U.S. population standards was repeated because updated population standards were not available.

Because correlates of HRQOL can provide insight into modifiable factors that contribute to HRQOL, we explored relationships between HRQOL and social support and well-being by calculating the Spearman's correlation between HRQOL scores and MSPSS and WHOQOL-BREF scores. Attrition analyses compared sociodemographic and clinical characteristics of participants at baseline to determine if there were significant differences between those who completed follow-up HRQOL and those who did not.

Because mental health (as well as access to gender-affirming care) can be negatively affected by adverse sociopolitical events such as the pandemic, anti-trans policies, and anti-trans social media, we looked for an association between HRQOL and time. Temporal analysis included comparison of follow-up HRQOL scores before and during pandemic defined as March 7, 2020, to March 2022. We employed linear regression to correlate HRQOL scores and time (2019–2022) during follow-up to test for a trend.

Results

Characteristics of the follow-up sample

Among the 173 participants who completed the baseline HRQOL assessment, 108 completed follow-up at 24 months (62.4% response rate) between May 2019 and March 2022. Among the 108 with complete data, 55 completed the CHQ-CF87 at baseline and follow-up; 38 completed the SF-36v2 at baseline and follow-up; 15 completed the CHQ-CF87 at baseline; and SF-36v2 at follow-up due to reaching age 18 years of age. The time between baseline survey administration and follow-up was on average 23.7±4 months.

Loss to follow-up (n=55) was largely attributable to patients having no GWC visit scheduled or having a visit outside the follow-up time window of 24±6 months. Other reasons for loss to follow-up included moving out of the area (n=4), declining to participate at follow-up (n=4), and loss of a mailed informed consent document (n=1).

About half of the follow-up CHQ-CF87 surveys (n=27) were completed pre-pandemic, and half (n=28) during the pandemic. Most SF-36v2 respondents (71%) completed their HRQOL pre-pandemic with 29% completing it during the pandemic. Of those who aged into the SF-36v2, 11 completed the SF-36v2 pre-pandemic and 4 during the pandemic.

Table 3 summarizes the demographic characteristics of the study population at baseline and compares follow-up responders versus nonresponders. The main differences between responders and nonresponders were mean age at registry enrollment (16.4 years for responders and 17.4 for nonresponders; [p=0.042]) and mean age at GWC presentation (15.8 years for responders and 16.8 for nonresponders; [p=0.040]). Both groups were predominantly white, non-Hispanic.

Table 3.

Comparison of Baseline Patient Demographics and Characteristics Between Responders with a Follow-Up Health-Related Quality of Life and Nonresponders

Demographics and characteristicsa	Baseline HRQOL (n =173)	Responders follow-up HRQOL (n =108)	Nonresponders (n =65)	p b
Age at enrollment (years), mean±SD	16.8±3.2	16.4±3.1	17.4±3.3	0.042
Age (years) at clinic presentation, mean±SD	16.2±3.1	15.8±3.1	16.8±3.1	0.040
Assigned sex at birth
Male	47 (27.3)	24 (22.4)	23 (35.4)	0.064
Female	125 (72.7)	83 (77.6)	42 (64.6)
Gender identity at enrollment
Transmasculine	112 (64.7)	75 (69.4)	37 (56.9)	0.247
Transfeminine	41 (23.7)	22 (20.4)	19 (29.2)
Gender expansive	20 (11.6)	11 (10.2)	9 (13.9)
Racec
White	164 (94.8)	103 (95.4)	61 (93.8)	0.673d
Black or African American	8 (4.6)	6 (5.6)	2 (3.1)
Asian or Pacific Islander	3 (1.7)	1 (0.9)	2 (3.1)
Native American/Alaska Native	2 (1.2)	1 (0.9)	1 (1.5)
Other	3 (1.7)	2 (0.9)	1 (1.5)
Ethnicity
Hispanic or Latino	14 (8.6)	8 (7.9)	6 (9.7)	0.698
Non-Hispanic or Latino	149 (91.4)	93 (92.1)	56 (90.3)
Education level at enrollment
Elementary	9 (9.4)	6 (9.1)	3 (10.0)	0.977
Middle	17 (17.7)	12 (18.2)	5 (16.7)
High	70 (72.9)	48 (72.7)	22 (73.3)
Youth out of school at enrollment
Homeschooled	5 (6.8)	3 (7.7)	2 (5.7)	0.759
Taking time off	1 (1.4)	0	1 (2.9)
Formally withdrew (no diploma)	2 (2.7)	2 (5.1)	0
High school diploma or equivalent	20 (27.0)	10 (25.6)	10 (28.6)
Pursuing higher education	46 (62.2)	24 (61.5)	22 (62.9)

^a Table values are mean±SD for continuous variables and n (column %) for categorical variables; numbers may not sum to totals due to missing data; column percentages may not sum to 100% due to rounding.

^b p-Values pertain to comparisons between responders with a follow-up HRQOL and nonresponders.

^c Numbers do not sum to totals due to respondents choosing multiple categories.

^d p-Value compares % other than white/white between responders/nonresponders.

Bold font denotes p<0.05.

Table 4 presents the demographic characteristics of the follow-up sample. Most (84%) were attending high school, and only 14% were out of school and employed. The majority of respondents (62%) drove 1–1.5 h to the GWC. Most (87%) had access to high-speed internet at home. Most respondents (60%) reported living in a rural area and 67% reported high levels of social support. Most respondents (60%) reported being able to accept their bodily appearance at follow-up. The WHOQOL psychological domain score for the follow-up sample was 52, which is less than 67, the normative WHOQOL psychological domain score for adolescents and young adults.

Table 4.

Patient Characteristics and Multidimensional Scale of Perceived Social Support and World Health Organization Quality-of-Life Brief Version Results at Follow-Up

Demographics and characteristics	Follow-up HRQOL (n =108)
Gender identity at follow-up
Transmasculine	77 (71.3)
Transfeminine	19 (17.6)
Gender expansive	12 (11.1)
Gender-affirming medical treatments during follow-up
None	6 (5.6)
GnRH agonist alone	10 (9.3)
Gender-affirming hormone therapya alone	43 (39.8)
Gender-affirming hormone therapy+GnRH agonist	25 (23.1)
Surgery+Gender-affirming hormone therapy	21 (19.4)
Surgery+GnRH agonist+Gender-affirming hormone therapy	3 (2.8)
Education level at follow-up—youth in school, n (%)	50
Elementary	3 (6.0)
Middle	5 (10.0)
High	42 (84.0)
Education level at follow-up—youth out of school, n (%)	54
Homeschooled	1 (1.9)
Taking time off	0 (0.0)
Formally withdrew (no diploma)	3 (5.6)
High school diploma or equivalent	18 (33.3)
Pursuing higher education/college graduate	28 (51.9)
If in school, is school gender affirming? % yes	97.6
If yes, how?
Access to gender neutral bathrooms, %	22.2
Access to supportive guidance counselor, teacher, or administrator, %	37.0
School addressed gender-related bullying to the respondent's satisfaction, %	14.8
% Employed full time	13.7
% Reported rural residenceb	59.8
% High-speed internet access at home	89.6
% Receiving mental health counseling at follow-up	64.5
Driving time to GWC (hours), mean±SD	1.4±0.7
Multidimensional scale of perceived social support,c mean±SD	64.1±14.9
n (%) level of social support
Low support (score 12–35)	7 (6.5)
Moderate support (score 36–60)	29 (26.9)
High support (score 61–84)	72 (66.7)
Subscale scores
Family support	20.3±5.8
Friend support	21.9±5.6
Support from a significant other	22.0±6.2
WHOQOL-BREF psychological domaind score, mean±SD	52.0±20.4
Range	6–94
“Are you able to accept your bodily appearance?”
Not at all	11 (10.3)
A little	31 (29.0)
Moderately	26 (24.3)
Mostly	34 (31.8)
Completely	5 (4.7)

^a Gender-affirming hormone therapy, including testosterone, estradiol, and/or other gender-affirming medications

^b Includes small town or village, near a small town or village (can walk to town or village), about two miles from a small town or village (too far to walk), or remote area (farm, forest, etc.) that is more than walking distance from the nearest small town or village.

^c MSPSS.²⁷

^d WHOQOL-BREF Psychological domain²⁶ has 6 items scaled from 1 to 5; last question Q26 is negatively phrased (How often do you have negative feelings, such as blue mood, despair, anxiety, or depression?) so it is reverse scored, when summing the total score. The domain scores were then transformed to 0–100 scale to compare with the normative psychological domain score for adolescents and young adults (mean=67).

GnRH, gonadotropin-releasing hormone; GWC, Gender Wellness Center; MSPSS, Multidimensional Scale of Perceived Social Support; WHOQOL-BREF, World Health Organization Quality-of-Life Brief Version.

CHQ-CF87 results

The reported/documented gender identities for follow-up CHQ-CF87 subjects were 40 transmasculine, 8 transfeminine, and 7 GE. Most youth (42/55) had socially transitioned at both school and home, whereas 13/55 had socially transitioned only at home. CHQ-CF87 scores significantly improved in the Behavior (p=0.002) and Role/Social Limitations—Physical (p=0.029) subscales (Fig. 1). While most of the other subscales also improved, two (Bodily Discomfort and Family Cohesion) worsened slightly during follow-up, but neither change met the threshold for significance.

FIG. 1.

CHQ-CF87 scores among subjects 8 to 17 years of age at baseline, 2 year follow-up, and in comparison to U.S. population standards and for those with two chronic conditions. CHQ-CF87, Child Health Questionnaire-Child Form 87; SF36v2, Short Form-36v2.

Gender identity was significantly associated with the Role/Social Limitations—Physical score. Among GE youth, the score for this subscale increased from 71.43 at baseline to 88.89 at follow-up (p=0.029). GE youth tended to score lower than transfeminine (95.83) or transmasculine (95.16) subjects at baseline, and follow-up (transfeminine [98.61] or transmasculine [98.01]).

Receipt of 2–3 gender-affirming treatments was associated with an increase in CHQ-CF87 Global Behavior score (“Compared to other children your age, your behavior is … excellent – poor”) from 63.91 at baseline to 77.39 at follow-up (p=0.032) among youth <18 years of age. Youth who did not have any treatment had Family Cohesion scores that decreased from 61.67 at baseline to 30.00 at follow-up (p=0.034).

Follow-up CHQ-CF87 scores were statistically significantly lower than 2015–2016 U.S. population standardized scores and youth with two chronic conditions for every subscale score, except for Role/Social Limitations—Physical (Fig. 1). This finding is similar to our baseline study.¹³

Linear regression showed no significant correlation between Behavior CHQ-CF87 Subscale scores and the follow-up period (2019–2022). Although there was a slight decline in scores over time, this correlation was not significant (p=0.07), suggesting there was no temporal trend.

Follow-up CHQ-CF87 subscale scores were positively associated with both the MSPSS and the WHOQOL-BREF psychological domain. Family support, as measured by the MSPSS, was positively associated with 8 of 11 CHQ-CF87 subscale scores, especially self-esteem (Spearman's rho=0.603, p<0.05; Table 5). MSPSS family support was more often associated with CHQ-CF87 subscales than support from a significant other, friend, and total social support. There was a strong positive association between half of the CHQ-CF87 subscales and the total WHOQOL-BREF score. CHQ-CF87 Self-esteem was highly associated with WHOQOL-BREF score (Spearman's rho=0.724, p<0.05).

Table 5.

Spearman's Correlation Analysis of Child Health Questionnaire-Child Form 87 Domain Scores with Multidimensional Scale of Perceived Social Support and World Health Organization Quality-of-Life Brief Version Psychological Domain

CHQ-CF87 domain	Spearman's correlation coefficients (rho)
	Total MSPSS	Family support	S/O support	Friend support	WHO-BREF Psych
Behavior	0.248	0.291	0.173	0.123	0.508
Mental health	0.375	0.465	0.239	0.160	0.674
General health	0.160	0.193	0.114	0.069	0.194
Physical functioning	0.310	0.364	0.127	0.214	0.415
Role/social limitations—emotional	0.178	0.288	0.166	−0.067	0.457
Role/social limitations—behavioral	0.178	0.218	0.048	0.094	0.323
Role/social limitations—physical	0.037	0.035	−0.037	−0.017	0.108
Bodily pain/discomfort	0.261	0.353	0.171	0.105	0.357
Self esteem	0.569	0.603	0.362	0.336	0.822
Family activities	0.196	0.362	0.072	0.025	0.337
Family cohesion	0.296	0.494	0.056	0.149	0.225

CHQ-CF87.²⁰

WHOQOL-BREF Psychological domain.²⁶

MSPSS.²⁷

MSPSS/WHOQOL-BREF scores used in this correlation analysis were sum totals.

Bold font denotes p<0.05.

SF-36v2 results

Among respondents 18–25 years of age, there were no significant change in any SF-36v2 subscale from baseline to follow-up (Table 6). Score trends showed marginal increases and decreases from baseline to follow-up, but none met the threshold for significance. For respondents who completed both the baseline and follow-up SF-36v2, there was no significant change in follow-up PCS; p=0.398) or MCS (p=0.142) during the study period. The number of gender-affirming medical treatments received was not associated with HRQOL. The SF-36v2 MCS remained lower than national average scores, but did not worsen over time. Most respondents (57%) reported receiving mental health counseling. Overall, the findings of our baseline study are unchanged: young adults scored significantly higher than 2009 U.S. standards on nearly all physical subscales of the SF-36v2, and lower on mental health subscales.¹³

Table 6.

Short Form-36v2 Scores at Baseline Versus Follow-Up (n=38)

	Baseline	2-Year follow-up
Subscale	Mean±SD	Mean±SD	p
Physical
Physical functioning	53.9±5.5	53.3±8.0	0.701
Physical role	52.7±6.0	53.7±6.1	0.495
Bodily pain	54.5±8.8	55.1±8.3	0.771
General health	52.3±9.9	51.9±9.8	0.943
Mental
Vitality	49.6±8.6	48.2±10.1	0.524
Social functioning	47.6±9.7	47.2±11.1	0.869
Mental health	45.2±8.6	43.5±11.2	0.454
Emotional role	44.8±10.5	44.1±10.8	0.765
Component summary
Physical (PCS)	56.7±7.9	57.3±7.8	0.725
Mental (MCS)	42.9±11.7	41.3±13.4	0.579

Short Form-36v2 Health Survey (SF-36v2).²³

For the 15 respondents who aged out of the CHQ-CF87 (baseline) and into the SF-36v2, SF-36v2 PCS showed a decline over time (R²=0.292). However, this finding is based on only 15 subjects, and was skewed by 3 low PCS scores that were <25. Follow-up MCS scores for these 15 respondents did not vary significantly with time (R²=0.015).

Follow-up SF-36v2 MCS subscale scores were significantly correlated with both MSPSS and WHOQOL-BREF scores. MCS and the vitality subscale were positively associated with all domains of social support and the WHOQOL-BREF total score (p<0.05). MCS score was positively associated with total social support, family, and significant other support (p<0.05).

Discussion

This prospective study provides two snapshots of HRQOL of TG/GE youth receiving gender-affirming care. Baseline HRQOL demonstrated mental health scores that were significantly lower than U.S. population standards. At the 2-year follow-up, HRQOL of TG/GE youth 8–17 years of age improved in two domains (behavior and the degree to which physical health problems limited school and friend activities), but remained stable among young adults (>18 years). At follow-up, most youth (60%) reported being able to accept their bodily appearance and most (67%) reported high levels of social support. However, HRQOL mental health scores remained statistically significantly lower than U.S. population standards for both age groups, even though 64% were receiving mental health counseling at follow-up.

Our study found that the number of gender-affirming medical treatments received was associated with improved CHQ-CF87 Global Behavior results among youth 8–17 years of age. This is consistent with other study findings that among transgender youth, self-perception of physical appearance and global self-worth improved after gender-affirming surgery³³ and gender-affirming treatment was associated better mental health.³⁴ Conversely, we note decreased family cohesion among those who did not have any gender-affirming medical treatment. Reduced family cohesion subscale scores may partially explain the absence of medical treatment; however, the reasons varied. For some, progress toward medical treatment was documented, but the process was not initiated during the study period, or Tanner staging requirements for medical treatment were not met. Other reasons included evolving gender identity and lack of parent/guardian consent for treatment due to documented family dysfunction.

Youth often acquire new skills in resilience, coping, and emotional regulation during adolescence, allowing them to build a stronger sense of self and a community of supportive peers. This psychosocial development may explain the lack of worsening HRQOL scores, given the significant challenges TG/GE ages 8–17 years of age face, and/or the lack of change in HRQOL among young adults (>18 years). The lack of improvement in HRQOL in this group (>18 years) may be due to the smaller sample size of our older cohort. Presenting at an older age for gender-affirming care has been associated with worse mental health,^35,36 which in turn may affect HRQOL.

The co-occurrence of the COVID-19 pandemic and anti-TG/GE political environment may have adversely affected these study participants.^3,4,14–17 TG/GE people and the clinicians providing gender-affirming care became targets of anti-TG/GE and anti-LGBTQ legislation.^3,14,15,17 These legislative attacks on TG/GE rights were a continuous source of negative news and likely represent a cumulative social and mainstream media insult to TG/GE youth, which may have increased their stigmatization.^37,38

What this study adds to the research of TG/GE youth is measurement and correlation of HRQOL patient outcomes, psychological well-being, and social support. The longitudinal clinical data available through the registry are a major strength of this study relative to other HRQOL studies that are cross-sectional in design and thus capture one measure of HRQOL in time. Our study provides 2 years of follow-up, within which to contextualize the HRQOL results. For example, the registry included participants' self-reported demographic characteristics, including gender identity at multiple time points and utilization of gender-affirming medical and surgical treatments. Thus the registry enabled us to evaluate the impacts of different variables, including TG/GE-specific variables, potentially contributing to HRQOL in this study population, which were well beyond the scope of generic HRQOL measures administered once and interpreted in isolation.

Limitations

Standard HRQOL instruments are generic and as such, may not capture the nuances of TG/GE experiences that may affect HRQOL. Prospective studies are needed to evaluate whether the CHQ-CF87 and SF-36v2 are appropriate tools for the detection of changes in HRQOL over time and in response to interventions such as gender-affirming care.

The 62.4% response rate and the relatively small sample size of this study limited options for multivariate modeling. Follow-up occurred during different COVID-19 pandemic stages and overlapped with the introduction and passage of different pieces of anti-trans legislation. Thus, exposure to these stressful events was not uniform during the follow-up period. Our temporal assessment was not designed to measure the impact of specific anti-trans legislation or pandemic phases.

The study population was clinic derived, was predominantly transmasculine, and lacks a suitable comparison group, so the results may not be generalizable to other populations. There are inherent limitations of data abstraction from the EMR as a primary source of data. Challenges remain in defining and measuring variables that specifically affect TG/GE populations (e.g., gender identity) and rural-based clinics (e.g., access to resources). Future studies should aim to identify sociocultural factors that contribute to change in HRQOL.

Conclusion

Our findings at 2-year follow-up are consistent with our baseline results, which indicated that TG/GE young people have significantly lower HRQOL mental health scores, as well as WHOQOL psychosocial scores compared to population standards. Based on these results, the mental health of TG/GE youth and young adults remains a significant health care need that should be targeted for improvement.

Abbreviations Used

CHQ-CF87

Child Health Questionnaire-Child Form 87

COVID-19

coronavirus disease 2019

EMR

electronic medical record

GE

gender expansive

GWC

Gender Wellness Center

GnRH

gonadotropin-releasing hormone

HRQOL

health-related quality of life

MCS

Mental Component Summary

MSPSS

Multidimensional Scale of Perceived Social Support

PCS

Physical Component Summary

SD

standard deviation

SF-36v2

Short Form-36v2

TG/GE

transgender and gender expansive

WHOQOL-BREF

World Health Organization Quality of Life Brief Version

Authors' Contributions

A.M.G.: Conceptualization, project administration and supervision (lead); writing—original draft (lead); and formal analysis. M.B.S. and J.O.: Formal analysis, data curation, and writing—review and editing (equal). N.T.: Investigation (lead) and writing—review and editing (equal). Ca.W.G. and Ch.W.G.: Conceptualization (supporting); investigation (equal); and writing—review and editing (equal).

Author Disclosure Statement

No competing financial interests exist.

Funding Information

In 2016, the Gender Wellness Center (GWC) was funded by the Robert Wood Johnson Foundation Clinical Scholars Program that supported, in part, the creation of the GWC Pediatric Registry used in this study. Jane O'Bryan received support from the Frank H. Netter MD School of Medicine Summer Research Fellowship and the Friends of Bassett in the summer of 2021 to do preliminary data analysis. No funding was received to assist with the preparation of this article or for conducting this study.

Cite this article as: Gadomski AM, Scribani MB, Tallman N, O'Bryan J, Wolf-Gould C, Wolf-Gould C (2023) Two-year follow-up study of health-related quality of life among transgender and gender expansive youth receiving gender-affirming care, Transgender Health 9:5, 389–398, DOI: 10.1089/trgh.2022.0165.