Gender-Diverse Youth's Experiences and Satisfaction with Telemedicine for Gender-Affirming Care During the COVID-19 Pandemic

Abstract

Purpose:

Telemedicine holds potential to improve access to gender-affirming care for gender-diverse youth (GDY), but little is known about youth's perspectives regarding its use. The purpose of this study was to explore GDY's experiences and satisfaction with telemedicine for gender-affirming care during the COVID-19 pandemic.

Methods:

An online, cross-sectional survey was completed by 12–17-year-old GDY after a telemedicine gender clinic visit. Demographic characteristics, responses to a 12-item telemedicine satisfaction scale, and items assessing interest in future telemedicine use were analyzed using descriptive statistics. Open-ended items exploring GDY's experiences were coded qualitatively to identify key themes.

Results:

Participants' (n=57) mean age was 15.6 years. A majority were satisfied with telemedicine (85%) and willing to use it in the future (88%). Most GDY preferred in-person visits for their first gender care visit (79%), with fewer preferring in-person for follow-up visits (47%). Three key themes emerged from the open-ended comments: (1) benefits of telemedicine including saving time and feeling safe; (2) usability of telemedicine such as privacy concerns and technological difficulties; and (3) telemedicine acceptability, which included comfort, impact on anxiety, camera use, and patient preference.

Conclusions:

Despite their preference for in-person visits, a majority of GDY were satisfied and comfortable with telemedicine, and expressed their interest in continuing to have telemedicine as an option for care. Pediatric gender care providers should continue services through telemedicine while implementing protocols related to privacy and hesitation regarding camera use. While adolescents may find telemedicine acceptable, it remains unclear whether telemedicine can improve access to gender-affirming care.

Introduction

Gender-diverse youth (GDY) experience significant inequities in health outcomes compared with their cisgender peers.^1–5 Having access to supportive environments^6–8 and gender-affirming medical care can reduce health disparities.^9–12 Unfortunately, few pediatric providers have the training and experience to support GDY, and those who do frequently practice in clinics affiliated with large urban academic medical centers.^13,14 This creates geographic barriers to receiving gender-affirming care as evidenced by our recent finding that >30% of patients traveled >1 h to receive care in one urban clinic.¹⁵

Telemedicine, or clinical visits, which utilize two-way, real-time, synchronous, patient-to-clinician audio-video technology, may address these geographic barriers to improve access to specialty care. Before the rapid uptake of telemedicine during the COVID-19 pandemic, there had been little investigation into understanding adolescents' experiences receiving care through telemedicine.^16–19 A few studies suggest that telemedicine is an acceptable mode of care delivery for adolescents that is both time and cost saving for patients and their families.^16,17,19 However, these studies did not allow for youth to provide feedback independent of their parents, limiting our ability to understand their unique experiences and needs.

More than a year before the COVID-19 pandemic, we explored GDY's interest in receiving gender-affirming care through telemedicine,¹⁵ with these data indicating that GDY with lower levels of perceived parental support were significantly more interested in receiving care using this modality.¹⁵ However, youth in that study referred to telemedicine as a hypothetical possibility. During the COVID-19 pandemic, many gender clinics transitioned to telemedicine, such that we can now learn from GDY with telemedicine experience. The objective of this study was to explore GDY's experiences and satisfaction with telemedicine for gender care during the COVID-19 pandemic.

Materials and Methods

Study design and population

We administered a cross-sectional survey with 12–17-year-old GDY after completion of a telemedicine gender clinic visit between March and July of 2020. For the purposes of this study, a telemedicine visit was defined as a two-way, real-time, synchronous, patient-to-clinician visit conducted using only audio or both audio and video technology. In this specific practice, providers used a combination of Doxy.me, Doximity, and embedded Epic platforms.

Electronic health records of all patients seen for a telemedicine gender clinic visit between mid-March and July of 2020 were reviewed by two authors (K.K. and G.S.) to identify potential study participants. All eligible GDY received a phone call from one of the study authors (K.K. or G.S.) after their visit to explain the study, and were texted or emailed a link to the survey if interested. Participants received a $5 USD Amazon gift card upon completion of the survey. Institutional Review Board approval, which included a waiver of parental consent for participation, was obtained before recruitment. All youth provided assent to participate.

Measures

The survey was administered electronically through Qualtrics and consisted of 43 items. The data presented here include demographic questions and survey items related to youth's experiences and satisfaction with telemedicine for gender-affirming care. Three open-ended questions assessed participants' experience with telemedicine (“Please tell us about your experience having a telemedicine visit”), comfort with telemedicine (“Were there parts of using telemedicine for the visit that made you feel more comfortable than you would have for a face-to-face visit? Why or why not?”), and any features of the telemedicine visit which produced discomfort (“Were there parts of using telemedicine for the visit that made you feel less comfortable than you would have for a face-to-face visit? Why or why not?”).

Satisfaction with telemedicine was assessed using a 12-item survey used in previous assessments of pediatric telepsychiatry.¹⁹ The scale consisted of four items related to technological functioning, three related to comfort and perceived privacy, three related to access to care, and two assessing overall satisfaction. Responses to each of these 12 items were selected on a 5-point Likert scale (strongly disagree to strongly agree).

Interest in future telemedicine use was assessed for 7 gender care-related services (i.e., first visit for gender care, gender follow-up visits, mental health care, sexual health care, talking about fertility preservation, initial consult with a surgeon, and talking with a social worker). Participants were asked to respond with “In-person visit,” “Telemedicine,” or “Not sure” to the following item: “If you or a friend were to need each of these services from your gender clinic provider after the COVID-19 pandemic, how would you prefer to receive them?” For the same 7 gender-related services, participants were asked to respond on a 5-point Likert scale (strongly disagree to strongly agree) to the following item: “Gender clinic providers should offer the following types of visits via telemedicine after the COVID-19 pandemic.”

Analyses

Demographic characteristics and items related to satisfaction and interest in future telemedicine use were analyzed using descriptive statistics. Response options to the three open-ended questions regarding experiences with telemedicine were used to develop an a priori codebook. Two authors (K.K. and G.S.) then used this codebook to code all free text responses and identify key themes. All codes were adjudicated to full agreement.

Results

Sample characteristics

In total, 133 GDY were identified as eligible for the study. Phone contact was made with 107 of the 133 youth (80.4%), and 5 GDY declined to participate at the time of the phone call. The remaining 102 GDY, 25 of whom were new patients who had not had an in-person visit previously, were sent a text message to assent to participate in a one-time online survey. Of the 102 GDY who were sent the text message, 57 completed the survey in its entirety (56% response rate). Participants' mean age was 15.6 years and approximately two-thirds identified as transmale (63.8%; Table 1). A majority of participants lived within a 1 h radius of the gender clinic (63.8%), while 13.8% reported living >2 h away.

Table 1.

Participant Characteristics

Characteristic	n (%)
Reason for visita
Gender care	56 (97)
Mental health	13 (22)
Reproductive health	4 (7)
Other	2 (4)
Gender identitya
Female	7 (12)
Male	19 (33)
Transfemale/transfeminine	8 (14)
Transmale/transmasculine	37 (64)
Nonbinary	5 (9)
Agender	2 (4)
Genderqueer	1 (2)
Gender nonconforming	5 (9)
Other	1 (2)
Prefer not to say	2 (4)
Race/ethnicitya
White	55 (95)
Black or African American	1 (2)
Hispanic or Latinx	5 (9)
Asian	2 (4)
American Indian or Alaska Native	1 (2)
Multiracial	4 (7)
Age (years)
13	5 (9)
14	8 (14)
15	9 (16)
16	15 (26)
17	20 (34)
Travel distance to care
≤30 min	14 (24)
Between 31 min and 1 h	23 (40)
Between 1 and 2 h	10 (17)
Between 2 and 3 h	6 (10)
Between 3 and 4 h	2 (4)
Not sure	3 (5)

^a Participants could select more than one option.

Experiences with telemedicine

Three key themes were identified from the 123 individual responses to the three open-ended items related to youth experiences with telemedicine for gender-affirming care (Table 2).

Table 2.

Representative Quotes from Identified Themes

Theme 1: Benefits of telemedicine	I really didn't have to worry about how I looked or how I moved [using telemedicine]. And I could take more time to gather my thoughts.
	The telemedicine visit was much easier for me as it only required about thirty minutes of time devoted to the appointment. This is a great improvement from the hours it would require to involve myself in an in-person appointment.
	Being in my own space made me more comfortable. Also being able to choose when my face was shown was nice.
	[Telemedicine] made me feel more safe and respected.
Theme 2: Telemedicine usability	Didn't have a single disconnect.
	It was easy to access and it was pleasant.
	The website was being glitchy, so we had to switch to using the landline. Apart from that, it was great!
	Connection issues and hearing issues can make things a bit awkward.
	I feel like everyone in the house could hear me talking and that made me very afraid because my provider needed to ask some sensitive questions, and my parents were with me, and couldn't exactly leave.
Theme 3: Telemedicine acceptability	In no part of the visit did I ever feel uncomfortable. I was just glad I could talk to someone about this.
	Although it was online, it was not very different from the in-person visit. It was a bit odd compared to usual, but it's just as effective.
	I prefer in-person, but I didn't feel any less comfortable during the telemedicine appointments.
	I'm usually very comfortable coming in for in-person visits and enjoy the environment, so both in-person and telemedicine appointments allow me to be equally as comfortable.
	The Telemedicine visits are a great way to do this especially during what is going on right now. I really appreciated being about to talk to a doctor amidst what's going on.
	I feel more comfortable sometimes because I am not required to show my face for the entire session, and I am self conscious of my acne. I do not think this makes telemedicine better than meeting in person, however.

Benefits of Telemedicine

The first theme centered on the benefits of telemedicine. GDY cited specific benefits of telemedicine, including saving time traveling to and from appointments: “It was easier considering I live an hour away,” and feeling safer using telemedicine: “Due to the COVID-19 situation, it feels more safe.”

Usability of Telemedicine

The second theme included GDY's thoughts about the usability of telemedicine, specifically ease or challenges with using technology for the visit and concerns around privacy. Some youth noted that visits were “easy to access” and “the quality was good,” while others reported having “problems with the audio through the website” and felt they “would prefer face-to-face as it is easier to focus on the topic.” In addition, one youth cited having “difficulty getting the paper work I needed” during a telemedicine visit. With regard to privacy during their telemedicine visit, some youth reported feeling “like everyone in the house could hear [them] talking and that made [them] very afraid,” while others felt this was less of a concern: “I was in a room by myself where my family couldn't hear.”

Acceptability of Telemedicine

The third theme reflected a range of respondents' views on the acceptability of telemedicine. GDY shared their preferences for telemedicine versus in-person visits as well as their comfort level with telemedicine and how it impacted their anxiety. Overall, these experiences were mixed. One GDY felt “it was a great visit, went very smooth and was very helpful,” while another felt it was “mostly the same as in person with options to make me more comfortable,” and another described their experience as feeling “very impersonal.” With regard to their preferences for future use, some youth stated that they preferred telemedicine as it “was simple and easy and [they] would recommend it,” while another GDY reported that they would “rather have a face-to-face visit” and still others felt they would “feel comfortable either way.” GDY also noted that they liked having “the option of not using a camera” or conducting the telemedicine visit with only audio but not video, “being able to choose when my face was shown was nice.” Some youth also reported that they experienced less anxiety utilizing telemedicine: “I have a lot of anxiety and doing the appointment from my own home was a lot easier than doing it in person.”

Satisfaction and future use

A majority of GDY were satisfied with the quality of services provided by telemedicine (84.8%), and 87.9% reported that they would be willing to see an Adolescent Medicine specialist using telemedicine in the future (Table 3). When asked about their preferences for receiving specific gender-affirming care services, GDY preferred in-person visits over telemedicine (Fig. 1). Specifically, more GDY desired in-person visits for their first gender care visit (79%), to receive sexual health care (86%), and to obtain an initial consult with a surgeon (90%), while fewer desired this for follow-up visits (47%), to receive support from a social worker (52%), or to discuss fertility preservation (52%). When asked if they felt telemedicine should be offered for the same gender services (Fig. 1), youth overwhelmingly felt that all 7 gender-related services should, with 81% feeling telemedicine should be offered for follow-up gender care visits and 78% for mental health care.

Table 3.

Youth-Reported Satisfaction with Telemedicine for Gender Care (n=57)

Domain and survey item	na (%) agreement	Meanb	SD
Satisfaction
I would be willing to see an adolescent medicine specialist using telemedicine in the future.	51 (88)	4.2	0.82
Overall, I am satisfied with the quality of services provided by telemedicine.	49 (85)	4.2	0.83
Technological functioning
I could understand the adolescent medicine specialist's recommendations.	56 (97)	4.4	0.71
I could hear the adolescent medicine specialist very well.	50 (86)	4.1	0.84
I could see the adolescent medicine specialist very well.	43 (74)	4.1	0.89
The telemedicine visit was as good as a regular in-person visit.	29 (50)	3.6	1.17
Comfort and perceived privacy
I could talk comfortably with the adolescent medicine specialist.	52 (90)	4.5	0.82
I felt the adolescent medicine specialist was comfortable with seeing me over the screen.	45 (78)	4.2	0.8
I felt confident that my information was not being overheard by others in the room.	40 (69)	3.8	1.18
Access to care
I received the help I needed because of our telemedicine visit with the adolescent medicine specialist.	47 (81)	4.1	0.74
Telemedicine allowed me to see an adolescent medicine specialist sooner.	32 (55)	3.7	1.02
I would not have received the services of an adolescent medicine specialist without telemedicine.	25 (43)	3.3	1.15

^a Indicates the number of participants who responded “Agree” or “Strongly Agree” only.

^b Means calculated with Strongly Disagree=1 through Strongly Agree=5.

SD, standard deviation.

FIG. 1.

Gender-diverse youth's perspectives regarding (A) preferred method for receiving gender care and (B) types of gender care services providers should offer through telemedicine.

Discussion

Findings from this study suggest that providers may be able to adapt their clinical practice when conducting telemedicine visits to improve GDY's experiences receiving care. Although GDY reported a preference to conduct future visits in person, the majority were both satisfied with telemedicine and willing to use it in the future.

Data from our pre-COVID-19 study suggested that GDY were interested in receiving gender-affirming care through telemedicine,¹⁵ but their experiences receiving gender-affirming care through this modality had not been previously investigated. Telemedicine may be a useful tool for patients and families who experience barriers to accessing gender-affirming care. Specifically, many GDY in our study reported feeling safer and less anxious conducting visits from their home than in person. Given the high prevalence of anxiety among GDY,^1,5 telemedicine may help increase access to care for a subset of GDY who experience anxiety related to in-person visits.

In line with prior studies evaluating telemedicine use in adolescents,^16,17,19 GDY reported multiple benefits of telemedicine, including minimizing time traveling to clinic and increased comfort conducting visits from home. These findings suggest that telemedicine may be able to reach youth previously unable to receive care in a multidisciplinary clinic because of geographic or cost-related barriers. Youth in our study expressed the most interest in using telemedicine for follow-up visits and providing social work support, both of which play an important role in ongoing care for many GDY and their families. Finally, some youth in our study reported a preference for using telemedicine to discuss fertility preservation, a service currently underutilized by GDY.^20–22 Additional investigation is needed to determine whether providing opportunities for GDY to discuss fertility preservation through telemedicine may help improve uptake of this service.

Despite a majority of GDY in our study feeling it was important that telemedicine be made available for gender-affirming care, youth overwhelmingly preferred to conduct certain types of gender care visits in person. This, combined with the variability in GDY's perspectives regarding telemedicine accessibility and usability, highlights the ongoing need to offer gender care visits flexibly, both through telemedicine and in person. GDY overwhelmingly preferred in-person visits for sexual health care, surgical consults, and initial gender care visits. We posit that preferences for in-person visits for these services may be related to concerns about privacy, limitations in providers' ability to perform a complete physical examination, or factors inherent to the in-person visits such as being in a space that is unequivocally affirming. Additional investigation is needed to explore the reasons for these preferences.

Because telemedicine will likely continue to be a part of our health care delivery system moving forward, it is important that providers are aware of ways they can make these visits more comfortable and private for GDY. First, providers must ensure that telemedicine visits are conducted using the same standards as in-person visits with respect to privacy and confidentiality. GDY's home environments differ in their level of parental support and degree to which youth are open with the individuals they live with about their gender identity. Therefore, it is critical that providers communicate proactively about privacy and confidentiality at the beginning of every telemedicine visit. This should include discussing if youth are in a safe space where they feel comfortable discussing confidential aspects of their care. Providers can use the chat function, available on a majority of telemedicine platforms, to assess a patient's comfort conducting confidential portions of the clinical encounter. Second, some youth in our study reported requesting to disable their camera, or at least the self-view capacity, for a portion of the visit. It is possible that this is associated with dysphoria related to seeing their own image on their screen, but further investigation is warranted to understand this phenomenon more fully. It may be helpful for providers to assess each patient's comfort with the video function at the beginning of each telemedicine visit, and for those interested, providing the option to disable the video or physically cover up the picture they see of themselves. Finally, it is important that telemedicine platforms develop ways for patients and providers to exchange documents that were previously provided to youth and their families during in-person visits, electronically. These documents, such as consent forms, support resources, and clinical assessments (e.g., GAD-7, PHQ-9), should be adapted to ensure that they can be exchanged just as seamlessly in the virtual environment.

This study should be interpreted in the context of several limitations. First, data were collected from a small sample of GDY accessing telemedicine care in one urban, multidisciplinary gender clinic. This clinic-based sample lacks racial diversity and represents only a subset of youth who had access to phone or internet service in the months after COVID-19. The studied population is also unique, in that they engaged in telemedicine at the onset of the COVID-19 pandemic when the clinic first began using this care delivery model. Most participants had been previously seen in person, which may also bias them toward future in-person care. Thus, these data may not represent the perspectives of the broader population of GDY, particularly those who are not currently accessing care in a gender clinic. Second, this was an exploratory study that recruited GDY after one telemedicine visit, so responses may be influenced by aspects of the specific visit rather than more general perspectives regarding telemedicine. Multiple respondents noted experiencing technology-related difficulties such as poor video or audio quality that may have impacted their overall experience and satisfaction with telemedicine. Unfortunately, it is not clear whether these technology-related difficulties were associated with limitations in patients' access to reliable wireless internet or to the specific telemedicine platforms available at the time of this study. Third, the response rate was relatively low, which may contribute to response bias. Finally, data were collected using a mixed-methods approach with open-ended responses to an online survey and a satisfaction scale that has been used in pediatrics, but not previously validated with GDY. Future investigation into GDY's experiences with telemedicine would benefit from utilizing more formal qualitative methods and scales validated with GDY as well as incorporating subgroup analysis investigating variables such as travel time to clinic, age, and gender identity.

Conclusion

Despite a preference for in-person visits, GDY report a high degree of satisfaction with telemedicine as well as a desire for this modality for receiving care to be available in the future. Gender care providers should continue to offer opportunities for GDY to receive care through telemedicine, and should communicate openly with GDY about privacy and options for camera use and make sure clinical resources can be exchanged seamlessly. Although additional investigation is necessary to more fully understand their experiences, our data suggest that telemedicine has promise as a tool to overcome some existing barriers and may improve access to care for GDY.

Abbreviation Used

GDY

gender-diverse youth

Authors' Contribution

G.M.S. contributed to this work as a cofirst author by conceptualizing the project, collecting and analyzing data, writing the majority of the first draft, corresponding with the journal, providing final approval of the version to be published. K.M.K. contributed to this work as a cofirst author by conceptualizing the project, data collection and analysis, interpretation of the work, revising the article, providing final approval of the version to be published. J.R. contributed to this work by conceptualizing the project, data collection and analysis, interpretation of the work, revising the article, providing final approval of the version to be published. E.M. contributed to this work by conceptualizing the project, interpretation of the work, revising the article, providing final approval of the version to be published. K.N.R. contributed to this work by conceptualizing the project, revising the article, providing final approval of the version to be published. D.F. contributed to this work through interpretation of the work, revising the article, providing final approval of the version to be published. L.P.R. contributed to this work through interpretation of the work, revising the article, providing final approval of the version to be published.

Author Disclosure Statement

The authors have nothing to disclose and no conflicts of interest to report.

Funding Information

This work was funded by the following training grants: TL1TR001858 (PI:Kraemer), T32HD087162 (PI:Miller), and the Seattle Children's Research Institute Career Development Award.

Cite this article as: Sequeira GM, Kidd KM, Rankine J, Miller E, Ray KN, Fortenberry JD, Richardson LP (2022) Gender diverse youth's experiences and satisfaction with telemedicine for gender-affirming care during the COVID-19 pandemic, Transgender Health 7:2, 127–134, DOI: 10.1089/trgh.2020.0148.