Timing and Delivery of Fertility Preservation Information to Transgender Adolescents, Young Adults, and Their Parents

Abstract

Purpose:

This study aimed to examine transgender adolescents and young adults’ (AYA) and their parents’ preferences regarding fertility preservation (FP) information provision and discussion timing.

Methods:

Data were derived from two separate studies: an online survey and semistructured qualitative interviews. Survey data were analyzed using descriptive statistics and interview data using conventional content analysis.

Results:

Survey participants (AYA: 88% and parents: 93%) preferred gender clinic physicians provide FP information, and nearly one-third endorsed mental health professionals (AYA: 28% and parents: 26%) or fertility specialists (AYA: 23% and parents: 30%). Interview participants’ FP discussion timing preferences ranged from the initial clinic visit, follow-up visits, before medical intervention, to mentioning FP early but deferring in-depth discussion to follow-up visits.

Conclusions:

Gender clinic physicians, mental health professionals, and fertility specialists should be prepared to discuss FP with transgender AYA and their parents. Opinions varied regarding when to provide FP information; therefore, discussion timing may need to be individualized.

Introduction

Current guidelines recommend all transgender adolescents and young adults (AYA) pursuing gender-affirming hormone (GAH) therapy (i.e., estrogen for transfeminine AYA; testosterone for transmasculine AYA) receive fertility counseling prior to treatment [1,2]. Despite recommendations, less than 5% of transgender AYA complete fertility preservation (FP) [3,4]. In contrast, 20–36% of transgender AYA report interest in genetic parenthood [5–7], introducing the possibility of later decisional regret among AYA. A key factor affecting transgender AYA’s FP decision-making is fertility information provision, with those perceiving FP discussions as incomplete or lacking reporting negative experiences with FP decision-making and less decisional satisfaction [8]. No studies have specifically addressed concrete ways to improve FP counseling for transgender AYA. To improve counseling practices, we examined transgender AYA’s and their parents’ preferences about who should provide FP information and timing of these discussions.

Methods

Data were derived from two separate studies—an online survey (Philadelphia, PA) and semi-structured qualitative interviews (Chicago, IL)—both of which broadly examined FP attitudes among transgender AYA and their parents. These studies were not designed or conducted in conjunction; however, both included questions on FP counseling preferences. The survey study was approved by the Children’s Hospital of Philadelphia Institutional Review Board (Protocol 16–013483). Eligible survey participants included transgender AYA ages 12–24 years receiving care at a pediatric gender clinic in Philadelphia, PA and their parents/guardians. Potential participants were recruited during routine medical visits. The interview study was approved by Lurie Children’s Hospital Institutional Review Board (Protocol 2016–675). Eligible interview participants included transgender AYA ages 14–24 years in Chicago, IL interested in or receiving GAH and their parents/guardians. Potential participants were recruited from a pediatric gender clinic and from community-based organizations serving transgender AYA in Chicago, IL.

Surveys queried: “Who would you prefer to talk to (you/you and your child) about fertility options?” Response options included a predetermined list of five provider types (gender clinic physicians, primary care providers, mental health professionals, medical social workers, and fertility specialists) plus a write-in response; participants could select multiple responses. The semi-structured qualitative interview guide covered a range of topics related to FP; for the present analysis, we examined only open-ended responses in the following domains: (1) preferences for who should provide FP information, and (2) FP discussion timing preferences. All interviews were conducted by a trained research assistant. Interviews continued until thematic saturation was reached for the full range of topics covered in the semi-structured interview guide.

Survey data were analyzed using descriptive statistics. Transcripts of interview responses relating to FP information provision relevant to the present analysis were analyzed in Dedoose [9] using conventional content analysis [10]. One coder reviewed transcripts and developed a coding scheme. A second coder reviewed and refined codes. The two coders met regularly over several weeks to discuss discrepancies and refine the coding scheme until reaching consensus. After consensus was reached, the first coder completed coding data. Inter-rater reliability was performed on a subset of transcripts, with pooled Kappas ≥0.80.

Results

Out of 99 eligible AYA, 64 AYA (mean age=17 years, range: 12–22) and 46 parents completed the survey. Out of a separate group of 30 eligible AYA, 18 AYA (mean age=18 years, range: 15–24) and 13 parents completed interviews. Most AYA were White (survey: 90%, interview: 61%) and transmasculine (survey: 58%, interview: 67%). Most parents were White (survey: 93%, interview: 85%) and women (survey: 73%, interview: 92%). Table 1 summarizes participant characteristics.

Table 1 –

Participant demographics of transgender adolescents, young adults and their parents

	Survey		Qualitative Interview
	AYA	Parents	AYA	Parents
Participants, n	64	46	18	13
Age, years, mean (range)	17 (12–22)	48 (32–65)	18 (15–24)	51 (45–57)
Sex Assigned at Birth, n (%)
Female	41 (64%)	n/aa	12 (67%)	12 (92%)
Male	23 (36%)	n/aa	6 (33%)	1 (8%)
Gender, n (%)
Woman/Trans Woman	23 (36%)	32 (73%)	6 (33%)	12 (92%)
Man/Trans Man	37 (58%)	11 (25%)	12 (67%)	1 (8%)
Genderqueer/Gender Non-Conforming	4 (6%)	1 (2%)	0 (0%)	0 (0%)
Non-Binary	0 (0%)	0 (0%)	1 (6%)b	0 (0%)
Race, n (%)
American Indian/Alaska Native	0 (0%)	0 (0%)	0 (0%)	1 (8%)
Asian/Pacific Islander	2 (3%)	1 (2%)	1 (6%)	0 (0%)
Black/African American	1 (2%)	1 (2%)	4 (22%)	1 (8%)
White	56 (90%)	42 (93%)	11 (61%)	11 (85%)
Multiracial	3 (5%)	1 (2%)	2 (11%)	0 (0%)
Hispanic/Latinx, n (%)
Yes	1 (2%)	0 (0%)	1 (6%)	1 (8%)
No	62 (98%)	46 (100%)	17 (94%)	12 (92%)
Have received gender-affirming hormones, n (%)	38 (59%)	21 (46%)c	16 (89%)	n/ad
Received a consult with a fertility preservation specialist, n (%)	n/ae	n/ae	9 (50%)	n/ae
Completed fertility preservation, n (%)	n/ae	n/ae	6 (33%)	n/ae

^aParents who participated in the survey did not report their sex assigned at birth.

^bTotals do not add up to 100% because participants could select more than one option for gender.

^cRefers to the number (percentage) of parents who responded that their child had received gender-affirming hormones.

^dParents who participated in the interviews did not report whether their child had received gender affirming hormones.

^eAYA and parents who participated in the survey and parents who participated in an interview did not report whether they/their child received a consult with a fertility preservation specialist or whether they/their child completed fertility preservation.

AYA: adolescents and young adults

n/a: not applicable

Most survey participants (AYA: 88%, parents: 93%) preferred gender clinic physicians provide FP information; nearly a third endorsed mental health professionals (AYA: 28%, parents: 26%) or fertility specialists (AYA: 23%, parents: 30%). Primary care providers (AYA: 14%, parents: 9%) and medical social workers (AYA: 8%, parents: 13%) were less frequently endorsed as preferred information sources. Two AYA survey participants (3%) wrote in “parents” as preferred FP information sources. Among interview participants, preferred FP information sources included gender clinic physicians, mental health professionals, fertility specialists, and parents (Table 2).

Table 2 –

Selected quotes about preferences regarding who should provide fertility preservation information and fertility preservation discussion timing

Quote Theme		AYA	Parents
Preferences for Who Should Provide Fertility Preservation Information	Medical Doctor at Gender Clinic (n=17 AYA, 11 parents)	S113: For me, I feel like [having] a medical doctor talk to me about it is probably better just because I feel like they’re the most informed.	S206: I would think the medical professional… the person who’s providing hormones because the hormones are what is going to end the possibility of having genetically related children, so I think that would be a responsible thing to do.
	Mental Health Professional (n=13 AYA, 6 parents)	S106: I think it is important from both. For a mental health provider, it is a discussion in terms of how someone feels or thinks about it, whereas, a doctor could give you more information about the actual process itself and what to expect. There are different factors in terms of what physical things should someone expect and what mental things someone should expect.	S205: I’d be happy talking to a qualified psychologist, up to a certain point, about fertility issues. But at some point it’s medical, and some parts are mental. And you need both. I’d like to get general information about fertility preservation from a psychologist. But ultimately, if I have medical questions, I want to go to a medical person.
	Fertility Specialist (n=2 parents)		S202: We were guided to [fertility specialists] who could answer any questions that we had once we did the initial consultation. I just think that for us it worked to have it presented in a medical, clinical way… [with] resources available.
	Parents (n=8 AYA, 4 parents)	S105: I feel like the parents [should bring up fertility preservation,] if they’re well educated. It could be a doctor, the therapist and the parent. Because the youth will most likely listen to their parents more. So just to hear their parents say it…they’ll be probably more open to hear it, especially if they’re young. Unless they don’t have the best relationship with their parents.	S209: So I think that of course it’s going to start with the parent if they’re not seeing a therapist at that time. It’s going to have to be a parent that initiates the talk [about fertility preservation] with their child… It’s going to start initially with the parents, and then of course they should talk to their doctor or someone [about] specifics.
Preferences for Fertility Preservation Discussion Timing	Initial Visit (n=10 AYA, 7 parents)	S106: I actually liked the way that it went for me where it was something I was made aware of on the first day, and having an opportunity to talk about it in general. It was just put on the table, open for discussion. And I think that it was the best way to go about it.	S213: I think it should be mentioned the first time because what if somebody doesn’t come back, or goes to someone else? Some people just… it never even occurs to them that that’s an issue.
	Follow-up Visit (n=6 AYA, 2 parents)	S111: I think probably a few visits in, because I remember from my first visit, it’s a little bit of a brain dump, you’re picking up so much information because while you understand your own gender identity and what your options are, sometimes it can seem like a lot more than maybe you had even thought about. I think having it come up a little later would definitely work best.	S202: I think it should be [after] several visits because it’s a lot. When you first go through this you have all these feelings and fears and concerns. You don’t want all the things you didn’t even think about to become a concern for you or to make it even more overwhelming than it already is.
	Before Medical Intervention (n=6 AYA, 5 parents)	S116: Personally, I don’t think it would be an issue if it didn’t come until several visits later… I think it should only really be brought up if you’re wanting to start hormones. But if you’re getting the referral to start, to talk to the endocrinologist or in the first meeting with the endocrinologist, that’s a good time to talk about it.	S206: I think that there’s a lot to take in. But when you start talking about hormones, that’s when I think immediately this should be brought up. Because infertility, if I’m understanding this correctly, would be a byproduct of the hormone treatments. So I think that should be discussed then.
	Early Mention, but Discuss in Depth at Follow-up Visit (n=6 AYA, 6 parents)	S112: I think the first time that there is a meeting, do an overview. A little introduction to [fertility preservation] just so they know about it, and can think about it… Later on, maybe they can have another session to go in more in detail about it. Start [with] the basics of it so they understand what it is and what they can do so they have options before they get too far.	S201: I would have appreciated an agenda of here’s things we’re going go through in case you feel that it’s important to discuss any of these privately in more depth with your child first… At the initial visit [fertility preservation] could be part of the whole overview of the process. It’s like, we’re not going to get to this today but [fertility preservation is] one of the questions that we’ll address in the somewhat near future.

AYA: adolescents and young adults

Preferences for timing of FP discussions varied (Table 2). Interview participants who preferred FP discussions at the initial visit appreciated providers being forthcoming about FP. By contrast, participants who preferred FP discussions at a follow-up visit described feeling overwhelmed during the initial visit and wanted to limit the amount of information initially provided. Some participants cited the importance of timing FP discussions based on the timeline for initiating GAH and providing FP information in the context of GAH discussions. Finally, several participants preferred that providers mention FP briefly in the initial visit as something that AYA and families should begin to consider; however, they preferred waiting until a follow-up visit to discuss FP in-depth.

Discussion

Gender clinic physicians, mental health professionals, and fertility specialists were frequently endorsed as preferred FP information sources. Therefore, these clinicians should be prepared to engage transgender AYA and their parents in FP discussions in order to provide patient-centered care. An unexpected finding was that participants cited parents of transgender AYA as an additional source of FP information. Although parents should not be expected to be FP content experts, this finding highlights the importance of engaging parents as additional sources of guidance around FP decision-making.

Participants varied in preferences for FP discussion timing, with many endorsing multiple timing options as optimal, suggesting there is no universally ideal time to discuss FP. Basing FP discussion timing on when individuals initiate GAH treatment may be particularly helpful. Those preferring FP discussions occur at follow-up visits cited feeling overwhelmed at the initial clinic visit. Clinicians should gauge the amount of information provided during the first clinical visit and AYA’s/parents’ response to information to determine whether to discuss FP in the initial encounter or wait until future visits. Clinicians may also elect to briefly mention FP during the initial appointment but give families time outside the clinic to consider FP before an in-depth discussion at a future appointment. Educational resources that AYA and parents could refer to for guidance could foster greater understanding between clinic visits and prepare them to engage in further discussion.

Study strengths include participants from two different geographic locations and the mixed methods approach involving data derived from interviews and surveys. Limitations include a homogenous sample of predominately White and transmasculine AYA. Thus, findings may not generalize to transfeminine AYA and AYA with other racial/ethnic identities. Furthermore, the number of AYA survey participants who completed FP is not known. Despite these limitations, our findings highlight the importance of multidisciplinary providers being informed and ready to counsel transgender AYA and families about FP. Digital health tools integrating evidence-based educational materials and perspectives on FP from a multidisciplinary team may be effective for facilitating patient-centered FP discussions.

Implications and Contribution.

Fertility preservation rates are low in transgender adolescents and young adults, in contrast to their higher reported interest in genetic parenthood. Fertility information provision affects decision-making. Findings highlight considerations for clinicians regarding the timing and delivery of fertility preservation information based on patient and family preferences.

Abbreviations

FP

Fertility preservation

GAH

Gender-affirming hormones

AYA

Adolescents and young adults