https://orcid.org/0000-0001-6104-4363
Abstract
To examine patient education, counselling practices, decision aids, and education resources related to fertility preservation for transgender and gender diverse (TGD) youth and young adults.
A scoping review was conducted using a comprehensive literature search (Ovid MEDLINE, PubMed Medline, OVID Embase, Ovid PsychoINFO, and Cochrane Central Register of Controlled Trials) conducted from 1806 to October 21, 2022. Inclusion criteria involved abstracts and articles on patient education, counselling, decision aids or education resources regarding fertility preservation for TGD youth and adults.
Of 1,228 identified articles and abstracts, only six articles met inclusion criteria. Three key themes were identified: (1) patient education and counselling practices (n = 4), with majority of patients receiving fertility preservation counselling at their respective centres; (2) decision aids and strategies for clinicians on fertility preservation for TGD individuals (n = 2) and; (3) patient education resources (n = 1). There was a paucity of literature on decision aids and patient education resources.
This study highlights the need to further develop and evaluate decision aids for healthcare providers and patient education resources, including eLearning modules, around fertility preservation for TGD individuals.
Many transgender and gender diverse (TGD) youth pursue the use of puberty blockers, such as gonadotropin releasing hormone (GnRH) agonists, and/or gender-affirming hormone therapy (GAHT), such as testosterone or estrogen, to reduce dysphoria and align their physical characteristics with their gender identity (1,2). Counselling around fertility preservation is recommended prior to youth starting these medications (2,3) as these medications may influence long-term fertility outcomes (2–6). Between 37.5% and 51% of transgender adults express interest in having genetically related children and report that they would have frozen gametes before GAHT therapy had it been offered (7–9). Although perspectives may change from adolescence to adulthood, many transgender youth do express similar interest (10). Recent studies indicate that 36% of transgender youth in the USA expressed interest in wanting future genetically related children and up to 61% of youth wanted to learn more about family planning and fertility preservation (11), often expressing a desire to learn about fertility and reproductive health through their healthcare providers (3,11).
Interestingly, significant differences exist with respect to rates of fertility preservation among TGD youth across different health systems. In North American centres, an estimated 0% to 6.8% of transgender youth reported pursuing fertility preservation prior to starting GAHT (12–14). However, other regions report higher rates; Australia and Belgium previously found that 32% of transgender youth (15) and 38% of transgender female youth (16), respectively, pursued fertility preservation. Numerous factors may contribute towards these differences, including funding and affordability, willingness to delay GAHT, availability and invasiveness of technologies and procedures, and cultural and societal differences, including potential stigma related to fertility preservation, parenting, and adoption (11,13–17). Importantly, inconsistent counselling practices or education regarding fertility preservation may also impact fertility preservation rates. In a survey of transgender youth across the USA, only 20.5% reported having ever discussed fertility in general, while only 13.5% discussed the effect of hormone therapy on fertility (11). Without adequate education, youth may not possess sufficient knowledge and understanding to make informed decisions about whether they want to pursue formal consultation about fertility preservation prior to initiation of GAHT.
Patient education highlights the collaboration among healthcare providers, patients, and their families to provide information and enable shared decision-making (18), all of which is crucial to optimal patient care. Such education may involve educational resources that are ideally created in partnership with patients and their families. Digital-based education provides flexibility and accessibility to education resources, allows repeated access, which favours comprehension and knowledge acquisition, and utilizes multimodal delivery of information through auditory and visual channels to facilitate learning (19–21). Informed decision-making is critical in this setting as GAHT may have lasting and irreversible effects on fertility for some youth.
The objective of this study was to examine patient education, counselling practices, decision aids, and education resources related to fertility preservation for TGD youth and young adults.
METHODS
Literature search
The search strategy (see Appendix 1) was designed in conjunction with an experienced research librarian at our institution. A comprehensive literature search was performed on October 21, 2022. The following five electronic databases were used: Ovid MEDLINE, PubMed Medline, OVID Embase, Ovid PsychoINFO, and Cochrane Central Register of Controlled Trials from 1806 to October 21, 2022. The text words contained in the titles and abstracts of relevant articles and the index terms used to described articles were utilized to develop a full search strategy. Search terms using various keywords and abbreviations included but were not limited to transgender, gender diverse, adolescent, young adult, fertility preservation, cryopreservation, egg freezing, sperm banking, patient education, health literacy, counselling, decision-making, and handout. The search strategy involved combining terms pertaining to transgender individuals, fertility preservation, and patient education. Only articles and papers published in English and involving human subjects were included.
Selection criteria
Inclusion criteria included abstracts and articles that discussed patient education or counselling practices, decision aids, or educational resources regarding fertility preservation for TGD youth and adults. The study included TGD adults given the relevance of perspectives of these individuals when considering counselling or education that TGD youth receive. Exclusion criteria include articles that were abstracts only, opinion articles, editorials and letters, commentaries, essays, and duplicated publications in more than one database. The bibliographies of the studies meeting inclusion criteria were cross-checked and hand-searched for further references to ensure comprehensive coverage of all relevant papers. Data were extracted from eligible articles using Microsoft excel and summarized in Table 1. For each relevant article, the type of participants and study design were noted. The primary outcomes included counselling and education practices, decision aids, and patient education resources. The aims, outcomes, and conclusions of these studies were summarized to determine the primary themes in this review.
Description of included studies
| Author, publication date | Title (Article/Abstract) | Participants | Study design | Aim | Outcome and conclusions |
|---|---|---|---|---|---|
| Nahata et al. (13), 2017 | Low fertility preservation utilization among transgender youth | 73 transgender children and adolescents (age range 9–18 years) | Retrospective chart review | Assess fertility preservation utilization/consideration amongst TGD youth prior to starting hormone therapy at a large paediatric academic centre | Main outcome: Only 2 (2.7%) patients opted attempt fertility preservation Counselling: 72 (99%) patients were documented to receive comprehensive fertility counselling. Counselling included a review of potential risks of infertility due to hormone therapy, established fertility preservation options (oocyte preservation, sperm banking) including estimated costs, and offer for formal fertility consultation. A summary of written information was also provided Conclusion: Providers should be educated to counsel patients and families about fertility preservation and family planning options |
| Brik et al. (16), 2018 | Use of fertility preservation among a cohort of transgirls in the Netherlands | 35 transgender female adolescents (mean age ± SD = 14.8 ± 1.9 years) | Retrospective chart review | Examine rates of attempted FP among transfemale who started GnRH and reasons did or did not attempt | Main outcome: 12 (38%) counselled transfemales attempted fertility preservation and 9 (75%) were able to complete sperm cryopreservation Counselling: All youth were informed about the risk of infertility and 32 (91%) transgender females were counselled on option of fertility preservation. No additional detail was provided around fertility preservation counselling |
| Segev-Becker et al. (22), 2019 | Children and adolescents with gender dysphoria in Israel: increasing referral and fertility preservation rates | 106 children and adolescents (age range 4.6–18.5 years) with gender dysphoria | Retrospective chart review | Describe patient characteristics at presentation, management and fertility preservation rates among this cohort | Main outcome: 14 (45%) pubertal transgender females and 3 (6.5%) pubertal transgender males completed fertility preservation Counselling: All TGD youth and parents were offered counselling on fertility preservation at a designated institutional fertility clinic |
| Rogers et al. (23), 2021 | A retrospective study of positive and negative determinants of gamete storage in transgender and gender-diverse patients | 3667 transgender and gender diverse patients (age range 10–85 years) who contacted Gender GP seeking treatment and had routine fertility counselling | Retrospective chart review | Categorize reasons that TGD people do and do not store gametes prior to hormonal treatment | Main outcome: 661 (20.1%) patients wanted to store gametes but unable to do so, while 151 (5.4%) patients stored gametes. Reasons for not pursuing fertility preservation included not wanting delay treatment, cost, invasiveness, and unavailable services locally Counselling and educational resources: Through GenderGP (digital service), all patients were provided counselling around fertility preservation, including initial information questionnaires. Additional educational resources provided included information leaflets and a separate webpage dedicated to fertility |
| Kolbuck et al. (24), 2020 | Formative development of a fertility decision aid for transgender adolescents and young adults: a multidisciplinary Delphi consensus study | 80 clinicians and/or researchers with expertise in reproductive medicine and/or transgender health | Delphi methodology | Identify critical areas and learning objectives to include in a decision aid about fertility preservation for TGD adolescents and young adults | Delphi procedure identified five priority content areas: (1) Basic Reproduction; (2) Gender-Affirming Medical Interventions: Impacts on Fertility; (3) Established Fertility Preservation Options; (4) Benefits and Risks of Established Fertility Preservation Procedures; (5) Alternative Pathways to Parents. Twenty-five learning objectives were prioritized in fertility-related decision aid |
| Lai et al. (25), 2021 | Effective fertility counselling for transgender adolescents: a qualitative study of clinician attitudes and practices | 12 clinicians (paediatrics, psychology, psychiatry and gynaecology) at Royal Children’s Hospital | Qualitative semi-structured interviews | Identify effective strategies for and qualities of fertility counselling for TGD adolescents | Five main elements of effective practices in fertility preservation counselling for TGD adolescents. This included: (1) A multidisciplinary practice model; (2) Shared decision-making between young people, parents and clinicians; (3) Strategies for patient engagement (including individualized adolescent sexual education and humour); (4) Flexible individualized approaches; (5) Reflective practice for clinicians As part of shared decision-making process, provision of written information is recommended to facilitate discussion within families and to allow patients and families to revisit information on their own time |
| Author, publication date | Title (Article/Abstract) | Participants | Study design | Aim | Outcome and conclusions |
|---|---|---|---|---|---|
| Nahata et al. (13), 2017 | Low fertility preservation utilization among transgender youth | 73 transgender children and adolescents (age range 9–18 years) | Retrospective chart review | Assess fertility preservation utilization/consideration amongst TGD youth prior to starting hormone therapy at a large paediatric academic centre | Main outcome: Only 2 (2.7%) patients opted attempt fertility preservation Counselling: 72 (99%) patients were documented to receive comprehensive fertility counselling. Counselling included a review of potential risks of infertility due to hormone therapy, established fertility preservation options (oocyte preservation, sperm banking) including estimated costs, and offer for formal fertility consultation. A summary of written information was also provided Conclusion: Providers should be educated to counsel patients and families about fertility preservation and family planning options |
| Brik et al. (16), 2018 | Use of fertility preservation among a cohort of transgirls in the Netherlands | 35 transgender female adolescents (mean age ± SD = 14.8 ± 1.9 years) | Retrospective chart review | Examine rates of attempted FP among transfemale who started GnRH and reasons did or did not attempt | Main outcome: 12 (38%) counselled transfemales attempted fertility preservation and 9 (75%) were able to complete sperm cryopreservation Counselling: All youth were informed about the risk of infertility and 32 (91%) transgender females were counselled on option of fertility preservation. No additional detail was provided around fertility preservation counselling |
| Segev-Becker et al. (22), 2019 | Children and adolescents with gender dysphoria in Israel: increasing referral and fertility preservation rates | 106 children and adolescents (age range 4.6–18.5 years) with gender dysphoria | Retrospective chart review | Describe patient characteristics at presentation, management and fertility preservation rates among this cohort | Main outcome: 14 (45%) pubertal transgender females and 3 (6.5%) pubertal transgender males completed fertility preservation Counselling: All TGD youth and parents were offered counselling on fertility preservation at a designated institutional fertility clinic |
| Rogers et al. (23), 2021 | A retrospective study of positive and negative determinants of gamete storage in transgender and gender-diverse patients | 3667 transgender and gender diverse patients (age range 10–85 years) who contacted Gender GP seeking treatment and had routine fertility counselling | Retrospective chart review | Categorize reasons that TGD people do and do not store gametes prior to hormonal treatment | Main outcome: 661 (20.1%) patients wanted to store gametes but unable to do so, while 151 (5.4%) patients stored gametes. Reasons for not pursuing fertility preservation included not wanting delay treatment, cost, invasiveness, and unavailable services locally Counselling and educational resources: Through GenderGP (digital service), all patients were provided counselling around fertility preservation, including initial information questionnaires. Additional educational resources provided included information leaflets and a separate webpage dedicated to fertility |
| Kolbuck et al. (24), 2020 | Formative development of a fertility decision aid for transgender adolescents and young adults: a multidisciplinary Delphi consensus study | 80 clinicians and/or researchers with expertise in reproductive medicine and/or transgender health | Delphi methodology | Identify critical areas and learning objectives to include in a decision aid about fertility preservation for TGD adolescents and young adults | Delphi procedure identified five priority content areas: (1) Basic Reproduction; (2) Gender-Affirming Medical Interventions: Impacts on Fertility; (3) Established Fertility Preservation Options; (4) Benefits and Risks of Established Fertility Preservation Procedures; (5) Alternative Pathways to Parents. Twenty-five learning objectives were prioritized in fertility-related decision aid |
| Lai et al. (25), 2021 | Effective fertility counselling for transgender adolescents: a qualitative study of clinician attitudes and practices | 12 clinicians (paediatrics, psychology, psychiatry and gynaecology) at Royal Children’s Hospital | Qualitative semi-structured interviews | Identify effective strategies for and qualities of fertility counselling for TGD adolescents | Five main elements of effective practices in fertility preservation counselling for TGD adolescents. This included: (1) A multidisciplinary practice model; (2) Shared decision-making between young people, parents and clinicians; (3) Strategies for patient engagement (including individualized adolescent sexual education and humour); (4) Flexible individualized approaches; (5) Reflective practice for clinicians As part of shared decision-making process, provision of written information is recommended to facilitate discussion within families and to allow patients and families to revisit information on their own time |
TGD, Transgender and gender diverse.
Description of included studies
| Author, publication date | Title (Article/Abstract) | Participants | Study design | Aim | Outcome and conclusions |
|---|---|---|---|---|---|
| Nahata et al. (13), 2017 | Low fertility preservation utilization among transgender youth | 73 transgender children and adolescents (age range 9–18 years) | Retrospective chart review | Assess fertility preservation utilization/consideration amongst TGD youth prior to starting hormone therapy at a large paediatric academic centre | Main outcome: Only 2 (2.7%) patients opted attempt fertility preservation Counselling: 72 (99%) patients were documented to receive comprehensive fertility counselling. Counselling included a review of potential risks of infertility due to hormone therapy, established fertility preservation options (oocyte preservation, sperm banking) including estimated costs, and offer for formal fertility consultation. A summary of written information was also provided Conclusion: Providers should be educated to counsel patients and families about fertility preservation and family planning options |
| Brik et al. (16), 2018 | Use of fertility preservation among a cohort of transgirls in the Netherlands | 35 transgender female adolescents (mean age ± SD = 14.8 ± 1.9 years) | Retrospective chart review | Examine rates of attempted FP among transfemale who started GnRH and reasons did or did not attempt | Main outcome: 12 (38%) counselled transfemales attempted fertility preservation and 9 (75%) were able to complete sperm cryopreservation Counselling: All youth were informed about the risk of infertility and 32 (91%) transgender females were counselled on option of fertility preservation. No additional detail was provided around fertility preservation counselling |
| Segev-Becker et al. (22), 2019 | Children and adolescents with gender dysphoria in Israel: increasing referral and fertility preservation rates | 106 children and adolescents (age range 4.6–18.5 years) with gender dysphoria | Retrospective chart review | Describe patient characteristics at presentation, management and fertility preservation rates among this cohort | Main outcome: 14 (45%) pubertal transgender females and 3 (6.5%) pubertal transgender males completed fertility preservation Counselling: All TGD youth and parents were offered counselling on fertility preservation at a designated institutional fertility clinic |
| Rogers et al. (23), 2021 | A retrospective study of positive and negative determinants of gamete storage in transgender and gender-diverse patients | 3667 transgender and gender diverse patients (age range 10–85 years) who contacted Gender GP seeking treatment and had routine fertility counselling | Retrospective chart review | Categorize reasons that TGD people do and do not store gametes prior to hormonal treatment | Main outcome: 661 (20.1%) patients wanted to store gametes but unable to do so, while 151 (5.4%) patients stored gametes. Reasons for not pursuing fertility preservation included not wanting delay treatment, cost, invasiveness, and unavailable services locally Counselling and educational resources: Through GenderGP (digital service), all patients were provided counselling around fertility preservation, including initial information questionnaires. Additional educational resources provided included information leaflets and a separate webpage dedicated to fertility |
| Kolbuck et al. (24), 2020 | Formative development of a fertility decision aid for transgender adolescents and young adults: a multidisciplinary Delphi consensus study | 80 clinicians and/or researchers with expertise in reproductive medicine and/or transgender health | Delphi methodology | Identify critical areas and learning objectives to include in a decision aid about fertility preservation for TGD adolescents and young adults | Delphi procedure identified five priority content areas: (1) Basic Reproduction; (2) Gender-Affirming Medical Interventions: Impacts on Fertility; (3) Established Fertility Preservation Options; (4) Benefits and Risks of Established Fertility Preservation Procedures; (5) Alternative Pathways to Parents. Twenty-five learning objectives were prioritized in fertility-related decision aid |
| Lai et al. (25), 2021 | Effective fertility counselling for transgender adolescents: a qualitative study of clinician attitudes and practices | 12 clinicians (paediatrics, psychology, psychiatry and gynaecology) at Royal Children’s Hospital | Qualitative semi-structured interviews | Identify effective strategies for and qualities of fertility counselling for TGD adolescents | Five main elements of effective practices in fertility preservation counselling for TGD adolescents. This included: (1) A multidisciplinary practice model; (2) Shared decision-making between young people, parents and clinicians; (3) Strategies for patient engagement (including individualized adolescent sexual education and humour); (4) Flexible individualized approaches; (5) Reflective practice for clinicians As part of shared decision-making process, provision of written information is recommended to facilitate discussion within families and to allow patients and families to revisit information on their own time |
| Author, publication date | Title (Article/Abstract) | Participants | Study design | Aim | Outcome and conclusions |
|---|---|---|---|---|---|
| Nahata et al. (13), 2017 | Low fertility preservation utilization among transgender youth | 73 transgender children and adolescents (age range 9–18 years) | Retrospective chart review | Assess fertility preservation utilization/consideration amongst TGD youth prior to starting hormone therapy at a large paediatric academic centre | Main outcome: Only 2 (2.7%) patients opted attempt fertility preservation Counselling: 72 (99%) patients were documented to receive comprehensive fertility counselling. Counselling included a review of potential risks of infertility due to hormone therapy, established fertility preservation options (oocyte preservation, sperm banking) including estimated costs, and offer for formal fertility consultation. A summary of written information was also provided Conclusion: Providers should be educated to counsel patients and families about fertility preservation and family planning options |
| Brik et al. (16), 2018 | Use of fertility preservation among a cohort of transgirls in the Netherlands | 35 transgender female adolescents (mean age ± SD = 14.8 ± 1.9 years) | Retrospective chart review | Examine rates of attempted FP among transfemale who started GnRH and reasons did or did not attempt | Main outcome: 12 (38%) counselled transfemales attempted fertility preservation and 9 (75%) were able to complete sperm cryopreservation Counselling: All youth were informed about the risk of infertility and 32 (91%) transgender females were counselled on option of fertility preservation. No additional detail was provided around fertility preservation counselling |
| Segev-Becker et al. (22), 2019 | Children and adolescents with gender dysphoria in Israel: increasing referral and fertility preservation rates | 106 children and adolescents (age range 4.6–18.5 years) with gender dysphoria | Retrospective chart review | Describe patient characteristics at presentation, management and fertility preservation rates among this cohort | Main outcome: 14 (45%) pubertal transgender females and 3 (6.5%) pubertal transgender males completed fertility preservation Counselling: All TGD youth and parents were offered counselling on fertility preservation at a designated institutional fertility clinic |
| Rogers et al. (23), 2021 | A retrospective study of positive and negative determinants of gamete storage in transgender and gender-diverse patients | 3667 transgender and gender diverse patients (age range 10–85 years) who contacted Gender GP seeking treatment and had routine fertility counselling | Retrospective chart review | Categorize reasons that TGD people do and do not store gametes prior to hormonal treatment | Main outcome: 661 (20.1%) patients wanted to store gametes but unable to do so, while 151 (5.4%) patients stored gametes. Reasons for not pursuing fertility preservation included not wanting delay treatment, cost, invasiveness, and unavailable services locally Counselling and educational resources: Through GenderGP (digital service), all patients were provided counselling around fertility preservation, including initial information questionnaires. Additional educational resources provided included information leaflets and a separate webpage dedicated to fertility |
| Kolbuck et al. (24), 2020 | Formative development of a fertility decision aid for transgender adolescents and young adults: a multidisciplinary Delphi consensus study | 80 clinicians and/or researchers with expertise in reproductive medicine and/or transgender health | Delphi methodology | Identify critical areas and learning objectives to include in a decision aid about fertility preservation for TGD adolescents and young adults | Delphi procedure identified five priority content areas: (1) Basic Reproduction; (2) Gender-Affirming Medical Interventions: Impacts on Fertility; (3) Established Fertility Preservation Options; (4) Benefits and Risks of Established Fertility Preservation Procedures; (5) Alternative Pathways to Parents. Twenty-five learning objectives were prioritized in fertility-related decision aid |
| Lai et al. (25), 2021 | Effective fertility counselling for transgender adolescents: a qualitative study of clinician attitudes and practices | 12 clinicians (paediatrics, psychology, psychiatry and gynaecology) at Royal Children’s Hospital | Qualitative semi-structured interviews | Identify effective strategies for and qualities of fertility counselling for TGD adolescents | Five main elements of effective practices in fertility preservation counselling for TGD adolescents. This included: (1) A multidisciplinary practice model; (2) Shared decision-making between young people, parents and clinicians; (3) Strategies for patient engagement (including individualized adolescent sexual education and humour); (4) Flexible individualized approaches; (5) Reflective practice for clinicians As part of shared decision-making process, provision of written information is recommended to facilitate discussion within families and to allow patients and families to revisit information on their own time |
TGD, Transgender and gender diverse.
RESULTS
The study selection is depicted in Figure 1. The search initially identified 1,228 abstracts published from 1806 until October 17, 2022. All abstracts after the initial search (n = 1,228) were screened to remove duplications, which identified 461 articles. These articles were subsequently reviewed using the PRIMSA-ScR guidelines (26) (see Appendix 1) involving the abovementioned inclusion and exclusion criteria. Forty-one key articles were identified and reviewed. A total of six relevant articles (13,16,22–25) from 2017 to 2021 were identified, synthesized, and summarized as depicted in Table 1. Two studies (24,25) evaluated perspectives of clinicians on the health of TGD people, while the remaining four studies (13,16,22,23) involved TGD youth and young adults. All studies were descriptive, with four studies (13,16,22,23) being retrospective chart reviews. Methods of data collection included surveys and questionnaires, semi-structured interviews, and Delphi methodology. Aims of these studies varied but included evaluation of rates of fertility preservation utilization, factors and barriers affecting use of fertility preservation, and strategies and components of effective counselling around fertility preservation. The results are described as three key themes: (1) patient counselling and education practices; (2) strategies and decision aids for fertility preservation and; (3) patient education resources.
PRISMA flow chart for scoping review. Of 1,228 studies identified, 461 titles and abstracts were screened. Forty-one full text articles were assessed for eligibility. Only six studies met eligibility and were included in this review.
Patient counselling and education practices for fertility preservation
Four articles (13,16,22,23) discussed the use of counselling and education on fertility preservation for TGD youth and adults prior to starting puberty blockers or GAHT. High rates (91% to 100%) of individuals in these studies received counselling on fertility preservation. While some studies only mentioned that TGD individuals received counselling on fertility preservation (16,22), two studies provided additional details around counselling practices (13,23). Nahata et al. (13) described their counselling practices which involved a review of the potential impact of infertility with GAHT, established fertility preservation options (i.e., oocyte cryopreservation for individuals assigned female at birth and sperm banking for individuals assigned male at birth), estimated costs and offering to refer for formal fertility preservation consultation. In this study, each patient was subsequently provided with a written summary. Rogers et al. (23) outlines the use of GenderGP, which is a private digital service for transgender people wanting to access GAHT. Although this service does not provide fertility preservation itself, this study describes their counselling practices, which involves an initial questionnaire to obtain more information around fertility preservation, followed by counselling with counsellors or therapists and completion of a capacity statement that indicates understanding of risks to fertility and the importance of exploring fertility preservation for those interested in their own genetically related children in the future. They also utilize information leaflets and additional online information through their Help Centre (23). In spite of uniformly high rates of counselling, overall rates of fertility preservation varied across studies, with the lowest rates reported at 2.7% in one study (13) and as high as 38% in another study (16).
Strategies and decision aids for fertility preservation
Two studies (24,25) outlined essential components and strategies for physicians with respect to counselling and decision aids around fertility preservation for TGD individuals. Kolbuck et al. (24) utilized a Delphi methodology involving 80 multidisciplinary experts in reproductive medicine and paediatric transgender health care to identify essential content areas and objectives for a fertility preservation decision aid. They determined five priority content areas and 25 learning objectives related to fertility-related decision aids for TGD adolescents and young adults. The five included content areas were: (1) Basic Reproduction; (2) Gender-Affirming Medical Interventions: Impacts on Fertility; (3) Established Fertility Preservation Options; (4) Benefits and Risks of Established Fertility Preservation Procedures; and (5) Alternate Pathways to Parenting. A sixth content area, Experimental Fertility Preservation Options, was only endorsed by 73% of experts and therefore excluded. Amongst the 25 learning objectives, the three objectives with highest rating as “very important” or “extremely important” included “To summarize the benefits and risks of established fertility preservation” (99%), “To explain how gender-affirming hormone treatment impacts fertility” (97%), and “to identify established fertility preservation options in the United States” (96%).
Lai et al. (25) utilized qualitative semi-structured interviews for 12 clinicians (specialties included paediatrics, psychology, psychiatry, or gynaecology) at a single-centre involved in fertility counselling for TGD individuals in order to identify effective strategies for and qualities of fertility counselling for this population. The five main themes included: (1) Ensuring a multidisciplinary practice model; (2) Shared decision-making amongst young people, parents and clinicians; (3) Strategies for patient engagement; (4) Flexible and individualized approach and; (5) Reflective practices for clinicians. They further elaborate that, as decision-making for families and patients often requires additional time to consider and gain more experience to inform their decision, providing written information allows patients and their families to revisit such information on their own time. They emphasize that this will also facilitate discussion within families. They conclude that the use of decision aids helps TGD individuals make informed decisions. No further details on the content included in this written information or use of other strategies were outlined in this study.
Patient education resources for TGD people
Only one (23) article discussed patient education resources. As mentioned above, Rogers et al. (23) outlines that as part of their counselling practices on GenderGP for fertility preservation prior to starting GAHT, patients receive information leaflets and are directed to an additional website dedicated to fertility, the latter which includes specific advice, FAQs (e.g., various options for fertility preservation and how to proceed with fertility preservation for those interested), and signposting to other services such as Fertility Network UK and Human Fertilisation and Embryology Authority. It is important to note that these resources are not youth-specific.
DISCUSSION
While there is rapidly expanding research and literature on the care of TGD youth, literature on fertility preservation in this population is under-represented. In this scoping review, we identified only two studies that describe effective strategies and decision aids for health care practitioners on fertility preservation for TGD individuals. The suggested content of fertility preservation counselling, including explanations on how GAHT impacts fertility, available fertility preservation options, and benefits and risks of each option (24), is consistent with some of the counselling content offered to TGD people in two other studies in this scoping review (13,23). Lai et al. (25) also described important strategies around fertility preservation counselling and decision aids for health care practitioners, including using multidisciplinary and interprofessional practice model, shared decision-making, patient engagement strategies, being flexible and providing an individualized approach, and use of reflective practices for clinicians. While these studies emphasize the importance of developing a framework—both in terms of content and strategies—for patient education, counselling and decision aids regarding fertility preservation for TGD individuals, there is limited information on the application or evaluation of such strategies and practices. Further research in this area is required.
This scoping review found very limited published literature on patient education resources regarding fertility preservation for TGD individuals, with only one study (23) that described the use of information leaflets and an online website. No literature on the use of eLearning modules was identified in spite of the benefits of digital-based learning (19–21). Patient education on fertility preservation is more established in other patient populations such as those with cancer who receive gonadotoxic therapy (27). Given the importance and recommendations of fertility preservation counselling for TGD individuals (3), greater efforts are therefore required to develop and evaluate patient education resources on fertility preservation in this population.
Further, as the focus of this study was on education and counselling practices on fertility preservation as opposed to overall rates and perspectives of fertility preservation, the high rates of fertility preservation counselling noted in several studies (13,16,22,23) in this scoping review may not reflect all clinical practices, with other studies noting only 13.5% of youth having been counselled on the effect of hormone therapy on fertility (11). The rates of fertility preservation attempted and completed in some of the studies included in this review may similarly not reflect all clinical settings, including North America (12–14). Important barriers may mitigate rates of fertility preservation, including limited access to and high costs of fertility preservation and storage (13,14,28,29). Differences in the relative ease and invasiveness of various fertility preservation options may in part explain differences in reported rates of fertility preservation attempts and completion, including between transgender men and women (13,14).
Limitations
Firstly, this study did not evaluate grey literature. It is possible that additional studies highlighting counselling practices, decision aids, and resources for patient education, including eLearning modules or written information, may exist but would not be captured in this study. Additionally, only studies written in English were included and thus it is possible that additional studies, including centres which may have higher rates of fertility preservation counselling and attempts, may not have been captured in this scoping review.
CONCLUSION
Although counselling around fertility preservation for TGD youth is recommended (3), existing practices around counselling, including decision aids, and education resources for patients are not well described. The aim and intent of this scoping review was to examine current counselling and education practices, decision aids, and education resources for patients around fertility preservation in this population. While several studies highlight that fertility preservation counselling is offered to the majority of patients at their respective centres, few studies describe patient education resources or tools, as well as effective strategies and decision aids for clinicians on fertility preservation for TGD people. This study highlights the need to further develop decision aids for healthcare providers to enhance healthcare provider knowledge and comfort in counselling on fertility preservation. Moreover, in collaboration with community stakeholders, future efforts are needed to create and evaluate patient education resources, including eLearning modules, around fertility preservation for TGD youth and adults.
ACKNOWLEDGEMENTS
The authors would like to thank Jessie Cunningham, reference librarian at the Hospital for Sick Children, for her contributions towards developing the literature search strategy for this scoping review.
FUNDING
No funding to report.
CONFLICT OF INTEREST
All authors: No reported conflicts of interest. All authors have submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. Conflicts that the editors consider relevant to the content of the manuscript have been disclosed.
AUTHOR CONTRIBUTIONS
JRS conceptualized and designed the study, conducted the scoping review, extracted and synthesized data, drafted the initial manuscript and reviewed and revised the manuscript.
SR conceptualized and designed the study. SR reviewed the selected articles with no additional articles found. SR was involved in reviewing and revising the manuscript.
AUTHORSHIP CRITERIA
JRS is the guarantor of this work. As such, JRS takes responsibility for the study design, access to data and the decision to submit and publish the manuscript. All authors approved the manuscript. The authors alone are responsible for the content and writing of this article.
