Co-design and usability of an interactive web-based fertility decision aid for transgender youth and young adults.

OBJECTIVE: To develop a patient- and family-centered Aid For Fertility-Related Medical Decisions (AFFRMED) interactive website targeted for transgender and nonbinary (TNB) youth/young adults and their parents to facilitate shared decision-making about fertility preservation interventions through user-centered participatory design. METHOD: TNB youth/young adults interested in or currently receiving pubertal suppression or gender-affirming hormone treatment and parents of eligible TNB youth/young adults were recruited to participate in a series of iterative human-centered co-design sessions to develop an initial AFFRMED prototype. Subsequently, TNB youth/young adults and parents of TNB youth/young adults were recruited for usability testing interviews, involving measures of usability (i.e., After Scenario Questionnaire, Net Promotor Score, System Usability Scale). RESULTS: Twenty-seven participants completed 18 iterative co-design sessions and provided feedback on 10 versions of AFFRMED (16 TNB youth/young adults and 11 parents). Nine TNB youth/young adults and six parents completed individual usability testing interviews. Overall, participants rated AFFRMED highly on measures of acceptability, appropriateness, usability, and satisfaction. However, scores varied by treatment cohort, with TNB youth interested in or currently receiving pubertal suppression treatment reporting the lowest usability scores. CONCLUSIONS: We co-created a youth- and family-centered fertility decision aid prototype that provides education and decision support in an online, interactive format. Future directions include testing the efficacy of the decision aid in improving fertility and fertility preservation knowledge, decisional self-efficacy, and decision satisfaction.

Consensus Parameter: Research Methodologies to Evaluate Neurodevelopmental Effects of Pubertal Suppression in Transgender Youth.

Purpose: Pubertal suppression is standard of care for early pubertal transgender youth to prevent the development of undesired and distressing secondary sex characteristics incongruent with gender identity. Preliminary evidence suggests pubertal suppression improves mental health functioning. Given the widespread changes in brain and cognition that occur during puberty, a critical question is whether this treatment impacts neurodevelopment. Methods: A Delphi consensus procedure engaged 24 international experts in neurodevelopment, gender development, puberty/adolescence, neuroendocrinology, and statistics/psychometrics to identify priority research methodologies to address the empirical question: is pubertal suppression treatment associated with real-world neurocognitive sequelae? Recommended study approaches reaching 80% consensus were included in the consensus parameter. Results: The Delphi procedure identified 160 initial expert recommendations, 44 of which ultimately achieved consensus. Consensus study design elements include the following: a minimum of three measurement time points, pubertal staging at baseline, statistical modeling of sex in analyses, use of analytic approaches that account for heterogeneity, and use of multiple comparison groups to minimize the limitations of any one group. Consensus study comparison groups include untreated transgender youth matched on pubertal stage, cisgender (i.e., gender congruent) youth matched on pubertal stage, and an independent sample from a large-scale youth development database. The consensus domains for assessment includes: mental health, executive function/cognitive control, and social awareness/functioning. Conclusion: An international interdisciplinary team of experts achieved consensus around primary methods and domains for assessing neurodevelopmental effects (i.e., benefits and/or difficulties) of pubertal suppression treatment in transgender youth.

Formative development of a fertility decision aid for transgender adolescents and young adults: a multidisciplinary Delphi consensus study.

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.

Knowledge, Practice Behaviors, and Perceived Barriers to Fertility Care Among Providers of Transgender Healthcare.

PURPOSE: Transgender individuals may experience impaired fertility due to gender-affirming hormonal interventions (e.g., pubertal suppression treatment and/or exogenous hormones). Clinical practice guidelines recommend providers discuss fertility implications and options for fertility preservation. The goal of this study was to examine fertility knowledge, practice behaviors, and perceived barriers to fertility care among multidisciplinary providers who care for transgender pediatric and/or adult patients. METHODS: A 46-item survey was distributed to relevant listservs and at conferences with a focus on transgender health. RESULTS: Two hundred two providers completed the survey: (1) physicians (n = 87), (2) psychologists (n = 51), (3) Master (MA)-level mental health providers (n = 39), and (4) nonphysician healthcare providers, comprising advanced practice nurses, registered nurses, and physician assistants (n = 25). Overall knowledge was high (M = 3.64, SD = 1.61). Significant differences were identified in knowledge by provider type (p <.001) but not patient age group (p = .693). Physicians had significantly greater knowledge than MA-level mental health providers (p = .005). Variables associated with fertility discussion included provider-related barriers [b = -.42, p < .001], and perceived patient-related barriers, including perceptions that patients are unwilling to delay treatment [b = .12, p = .011] or are unable to afford fertility preservation (FP) [b = .12, p = .029]. CONCLUSIONS: While overall fertility-related knowledge was high, there was variability in domains of knowledge, as well as provider practice behaviors related to fertility counseling and referral for FP. Findings related to perceived barriers to fertility counseling and fertility preservation warrant further investigation; qualitative studies may be particularly helpful in understanding how specific provider- and patient-related barriers impact counseling and referral for fertility-related care.

Health care provider perceptions of fertility preservation barriers and challenges with transgender patients and families: qualitative responses to an international survey.

PURPOSE: To examine provider perceptions of practice behaviors and barriers related to fertility counseling, fertility preservation, and family building among transgender patients. METHODS: Participants were medical and mental health professionals who treat adult and youth transgender patients. Recruitment occurred online and in person, via professional listservs for transgender professionals, conferences, and gender clinics. From August-November 2017, 110 participants representing nine countries responded to four open-ended questions included on a survey related to provider practice behaviors and perceived barriers to fertility counseling, fertility preservation, and family building with transgender patients. Thematic coding analysis was used to identify themes. RESULTS: Multiple themes were identified including the following: access and cost issues; urgency for gender-affirming treatment; patient maturity and inability to make future-oriented decisions; and provider-related challenges pertaining to knowledge, role, and general lack of information in the nascent field of transgender reproductive health. CONCLUSION(S): This study yielded insights into practice behaviors, challenges, and perceived barriers to fertility counseling with transgender individuals and can serve as a basis for intervention development to optimize clinical practices with this population.

Psychological Functioning, Parenting Stress, and Parental Support among Clinic-Referred Prepubertal Gender Expansive Children.

OBJECTIVE: The purpose of this study is to describe psychological functioning, parenting stress, and parental support of gender expansiveness in prepubertal gender expansive children presenting to a specialized pediatric gender clinic and examine relations between parenting factors and child psychological functioning. METHODS: Standard-of-care questionnaires were completed by parents of all children presenting for services. Data from prepubertal children (i.e., Tanner stage 1 of pubertal development) seen between August 2013 and April 2018 were extracted from patient charts. RESULTS: Data were analyzed from 71 youth ages three to 11, including 20% (n=14) ages five and younger. Fourteen percent of the sample (n=10) met diagnostic cutoff criteria for Generalized Anxiety Disorder and 20% (n=14) for Oppositional Defiant Disorder. Caregivers reported varying levels of support of their child's gender expansiveness (female caregivers: M=78.85, SD=8.68, range=56-90; male caregivers: M=77.32, SD=10.37, range=53-90), and only 3% (n=2) of caregivers endorsed parenting stress levels in the high range. Parenting stress significantly predicted higher symptom counts across all eight diagnoses. Unexpectedly, higher levels of parental support predicted more symptoms of Major Depressive Disorder and Dysthymia. Parenting stress was a significant moderator of relations between gender-nonconformity and ADHD Hyperactive-Impulsive Type and Conduct Disorder symptoms-higher levels of gender nonconformity was associated with higher symptom counts at moderate and high levels of parenting stress (but not at low levels of parenting stress). CONCLUSIONS: Clinical interventions aimed at reducing parenting stress among caregivers of gender expansive children may have a positive effect on children's psychological functioning.

Observed differences in social behaviors exhibited in peer interactions between youth with spina bifida and their peers: neuropsychological correlates.

OBJECTIVE: To identify differences in social behaviors in observed peer interactions between children with spina bifida (SB) and peers, and to examine neuropsychological correlates of these differences. METHOD: A total of 100 youth (aged 8-15 years) with SB and peers participated in video-recorded interaction tasks, which were coded for interaction style, affect, and collaboration. Children with SB also completed a neuropsychological test battery. RESULTS: Children with SB demonstrated less adaptive social behaviors in peer interactions, particularly within the interaction style domain. Observational items found to be different between children with SB and their peers were best predicted by social language and attention abilities. CONCLUSIONS: Children with SB exhibit a less adaptive interaction style and lower levels of social dominance but are comparable with typically developing peers on other social behaviors. The observed group differences may have a neuropsychological basis.