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PURPOSE: No educational and decision support tools exist to aid transgender and non-binary (TNB) adolescents and young adults (AYA) in making decisions about fertility preservation in the context of initiating gender-affirming medical care that can impair fertility. This study identified critical content areas and learning objectives to include in a decision aid about fertility preservation targeted for TNB AYA. METHODS: Delphi methodology was leveraged to engage 80 multidisciplinary experts in reproductive medicine and pediatric transgender health care in a two round consensus building procedure. Proposed content areas rated as “probably keep” or “definitely keep” by 75% of experts were retained. Proposed learning objectives reaching 75% agreement on ratings of importance and priority were also identified. RESULTS: The Delphi procedure identified five priority content areas (Basic Reproduction; Gender-Affirming Medical Interventions: Impacts on Fertility; Established Fertility Preservation Options; Benefits and Risks of Established Fertility Preservation Procedures; Alternative Pathways to Parenting) and 25 learning objectives to prioritize in a fertility-related decision aid for TNB AYA. CONCLUSION: A multidisciplinary panel of experts achieved agreement around content areas and learning objectives to incorporate into a decision aid about fertility preservation for TNB AYA.

Purpose: This study aimed to identify factors affecting transgender adolescents' and young adults' (AYA) decisions to pursue fertility preservation (FP). Methods: Participants completed a semistructured interview between December 2016 and June 2017 to inform improvements in fertility counseling and the development of a fertility decision aid targeted to transgender youth. Interviews included open-ended questions within the following domains: (1) gender-affirming medical care received, (2) knowledge of gender-affirming hormone effects on fertility and FP options, (3) FP decision-making, and (4) how, when, and what information AYA prefer to receive regarding FP. The interviews were analyzed thematically. Results: Eighteen transgender AYA (ages 15–24) participated (60% participation rate). The majority was White (61%) and assigned female at birth (67%). Half received specialized FP counseling (50%). Few of the transgender AYA pursued FP (33%). Five key themes reflecting factors affecting transgender AYA's FP decision-making were identified: (1) future parenthood desires, (2) individual experiences of gender dysphoria, (3) family values around biological parenthood, (4) financial considerations, and (5) fertility information provision. Conclusions: Transgender AYA consider numerous factors in deciding whether to pursue FP. Although individual desires for and family values around biological parenthood influenced whether AYA pursued specialized FP counseling, individual experiences of gender dysphoria and costs of FP were barriers. AYA also identified shortcomings in fertility counseling with providers, highlighting the need to establish standardized counseling protocols and develop patient decision aids.

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.

Background: The medical community is paying increasing attention to the healthcare needs of adolescents diagnosed with gender dysphoria who desire medical interventions to bring their bodies and ge...

Objectives Consumers rely on online health information, particularly for unusual conditions. Disorders of Sex Development (DSD) are complex with some aspects of care controversial. Accurate web-based DSD information is essential for decision-making, but the quality has not been rigorously evaluated. The purpose of the present study was to assess the quality of online health information related to DSD presented by 12 pediatric institutions comprising the NIH-sponsored DSD-Translational Research Network (DSD-TRN). Methods DSD-TRN sites identified team webpages, then we identified linked webpages. We also used each institution search engine to search common DSD terms. We assessed webpages using validated tools: the Simple Measure of Gobbledygook (SMOG) determined reading level, the Patient Education Materials Assessment Tool (PEMAT) evaluated content for understandability and actionability, and the DISCERN tool assessed treatment decision-making information (for hormone replacement and surgery). We developed a “Completeness” measure which assessed the presence of information on 25 DSD topics. Results The SMOG reading level of webpages was at or above high-school grade level. Mean (SD) PEMAT understandability score for Team Pages and Team Links was 68% (6%); on average these pages met less than 70% of the understandability criteria. Mean (SD) PEMAT actionability score was 23% (20%); few patient actions were identified. The DISCERN tool determined that the quality of information related to hormone treatment and to surgery was poor. Sites’ webpages covered 12–56% of the items on our Completeness measure. Conclusions Quality of DSD online content was poor, and would be improved by using a variety of strategies, such as simplifying word choice, using visual aids, highlighting actions patients can take and acknowledging areas of uncertainty. For complex conditions such as DSD, high-quality web-based information is essential to empower patients (and caregiver proxies), particularly when aspects of care are controversial.