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Clinical practice guidelines for individuals with Turner syndrome (TS) recommend screening for neuropsychological concerns (NC) and mental health concerns (MHC). However, current provider screening and referral patterns for NC and MHC are not well characterized. Additionally, prevalence of and risk factors for NC and MHC vary across studies. This multicenter chart review study examined the prevalence, risk factors for, and management of NC and MHC in a cohort of 631 patients with TS from three pediatric academic medical centers. NC and/or MHC were documented for 48.2% of patients. Neuropsychological evaluation recommendations were documented for 33.9% of patients; 65.4% of the sample subsequently completed these evaluations. Mental health care recommendations were documented in 35.0% of records; subsequent documentation indicated that 69.7% of these patients received such services. Most notably, rates of documented MHC, NC, and related referrals differed significantly by site, suggesting the need for standardized screening and referral practices. TS diagnosis in early childhood was associated with an increased risk of NC. Spontaneous menarche was associated with increased risk of MHC. Younger age at growth hormone initiation was associated with both increased risk of isolated NC and co-occurring NC and MHC. Mosaic karyotype was associated with decreased risk of NC and MHC.

ObjectivesThis qualitative study examined how families share information and feelings about advanced pediatric cancer from the perspective of both parents and children, as well as how these perspectives vary by child developmental stage.MethodsParticipants (24 mothers, 20 fathers, 23 youth [children and adolescents]) were from a larger longitudinal study at an academic pediatric hospital. Eligible youth had advanced cancer (physician-estimated prognosis of 8 years old to participate independently), had an English-speaking parent, and lived within 140 miles of the hospital. Interviews were completed at enrollment and asked how families share information and emotions about the child’s cancer as a family.ResultsSaturation was reached at 20 interviews for mothers, fathers, and youth. Analyses revealed 4 major themes: (A) parents managing cancer-related information based on child age/developmental stage and processing styles of family members; (B) parents withholding poor prognosis information and emotions to maintain positivity; (C) lack of personal and familial emotion sharing; and (D) emotion sharing among their family and externally. Both parents and youth endorsed themes A, C, and D, but only parents endorsed theme B. Adolescents endorsed more themes than children. Parents of children (as opposed to adolescents) endorsed theme A more.Significance of resultsAlthough both parents and youth with advanced cancer were generally willing to talk about treatment, emotions were not consistently shared. Perspectives varied depending on the child’s developmental stage. Clinicians should assess parent and child information and emotion-sharing needs and provide individualized support to families regarding communication about advanced cancer.

Liver disease in children with Turner Syndrome (TS) is poorly understood relative to associated growth, cardiac and reproductive complications. This study sought to better characterize hepatic abnormalities in a large national cohort of youth with TS.Using electronic health record data from PEDSnet institutions, 2145 females with TS were matched to 8580 females without TS on eight demographic variables. Outcomes included liver enzymes (AST and ALT) stratified as normal, 1-2 times above the upper limit of normal (ULN), 2-3 times ULN and 3 times ULN, as well as specific liver disease diagnoses.Fifty-eight percent of youth with TS had elevated liver enzymes. Patients with TS had higher odds of enzymes 1-2 times ULN (OR: 1.7, 95% CI: 1.4-1.9), 2-3 times ULN (OR: 2.7, 95% CI: 1.7-3.3) and 3 times ULN (OR: 1.7, 95% CI: 1.3-2.2). They also had higher odds of any liver diagnosis (OR: 2.4, 95% CI: 1.7-3.3), fatty liver disease (OR: 1.9, 95% CI: 1.1-3.2), hepatitis (OR: 3.7, 95% CI: 1.9-7.1), cirrhosis/fibrosis (OR: 5.8, 95% CI: 1.3-25.0) and liver tumour/malignancy (OR: 4.8, 95% CI: 1.4-17.0). In a multinomial model, age, BMI and presence of cardiovascular disease or diabetes significantly increased the odds of elevated liver enzymes in girls with TS.Youth with TS have higher odds for elevated liver enzymes and clinically significant liver disease compared with matched controls. These results emphasize the need for clinical screening and additional research into the aetiology and treatment of liver disease in TS.Turner Syndrome, a chromosomal condition in which females are missing the second sex chromosome, is often associated with short stature, infertility and cardiac complications. Liver abnormalities are less well described in the literature. In this study, nearly 60% of youth with TS have elevated liver enzymes. Furthermore, patients with TS had a diagnosis of liver disease more often than patients without TS. Our results support the importance of early and consistent liver function screening and of additional research to define mechanisms that disrupt liver function in paediatric TS females.

Introduction: Turner syndrome (TS) is associated with a high risk of primary ovarian insufficiency. Current guidelines recommend early fertility counseling for affected youth and their families. This study assessed clinical providers’ (MD, NP, or PA) fertility counseling practices for girls with TS. Methods: TS providers were invited to complete a survey via the Pediatric Endocrine Society listserv. Descriptive statistics summarized variables of interest. Correlations were used to identify associations between barriers/practice characteristics and fertility preservation (FP) referral. Thematic analysis was used to examine qualitative responses. Results: 119 providers completed the survey. Seventy percent reported discussing fertility implications of TS routinely in pediatric care. Fifty-six percent reported often or always referring patients with spontaneous menarche to FP specialists, whereas only 19% reported often or always referring their patients without spontaneous menarche (p < 0.001). Barriers associated with FP referral frequency included unfamiliarity with FP options, belief that FP is not a possible goal for their patients, and absence of a local reproductive endocrinologist. Qualitatively, four referral barrier themes were identified: (1) questionable utility of referral, (2) lack of perceived interest among patients/families, (3) provider barriers (e.g., lack of knowledge), (4) logistical/structural barriers to accessing fertility-related care. Discussion/Conclusion: Pediatric endocrinology providers report inconsistently discussing fertility implications of TS. The frequency of referral to an FP specialist and factors/barriers affecting the decision to refer remain variable. Future research should focus on expanding provider education, addressing barriers to high-quality fertility counseling and referral for patients with TS, and investigating FP outcomes in TS.

OBJECTIVE: Fertility-related health care and decision-making needs for youth with differences of sex development (DSD) are complex and vary by condition and the values and preferences of each individual and their partner and/or family. Discussing fertility implications can be a challenging aspect of clinician and family communication about a DSD diagnosis. This qualitative study assesses fertility-related communication experiences of adolescents and young adults (AYA) with DSD. METHOD: Participants included 97 AYA with DSD ages 12–26 years (M = 18.5, SD = 3.9) who completed questionnaires on demographic and medical information and patient–clinician communication. A subsample of 33 AYA also completed semistructured interviews about experiences with fertility discussions. RESULTS: Two major themes, each with subthemes, were identified: (1) understanding of fertility related to (1a) one’s own fertility status, (1b) reproductive and parenting options, and (1c) emotional reactions to one’s own fertility status and (2) conversations about fertility related to (2a) reflections on conversations, (2b) barriers, and (2c) advice. CONCLUSIONS: AYA perspectives in this study provide important information about how youth with DSD learn about their fertility status, the impact their fertility status has on them, and the fertility-related conversations they have with their providers and families. Specific recommendations for providers and parents or caregivers include the following: inform youth of their fertility status as early as possible; be direct but patient in delivering information; begin by giving basic information and provide more detail as the conversation unfolds; revisit the conversation over time to allow for further discussion or information-seeking; offer additional information or resources, including behavioral health resources.

OBJECTIVE Medical care transition to adult care presents challenges for individuals with complex medical conditions such as Turner syndrome (TS). The goals of this study were to: (1) identify factors associated with transition readiness; (2) examine associations and differences between patients' and parents' perceptions of readiness using Transition Readiness Assessment Questionnaire (TRAQ). METHODS In a prospective cross-sectional study, girls with TS 12-25 years and one parent were recruited from 11/2019 to 12/2020. Three questionnaires were administered (demographic/clinical questionnaire, TRAQ, and TS Transition Readiness Assessment Questionnaire [TS-TRAQ]). Medical records were reviewed for karyotype and personal medical history. Descriptive statistics, Spearman's correlation, paired sample t tests, and linear regression were used to examine readiness and associated factors. RESULTS Of 44 eligible patients, 35 patients and 30 parents completed the study. Patient age, education, and life skills were associated with a higher TRAQ score (p

Executive function (EF) underlies broad health and adaptive outcomes. For transgender youth, navigating gender discernment and gender affirmation demand EF. Yet, factors associated with transgender youth EF are unknown. We investigate hypothesized predictors of EF: over-represented conditions among transgender youth (anxiety and depression symptoms, autism spectrum disorder [ASD]) and gender-affirming care. One-hundred twenty-four transgender 11−21-year-olds participated. Parents/caregivers completed EF and mental health report measures. ASD diagnostics and gender-affirming medication histories were collected. 21 % of non-autistic and 69 % of autistic transgender youth had clinically elevated EF problems. Membership in the gender-affirming hormone treatment group was associated with better EF. ASD, anxiety symptoms, and membership in the long-duration pubertal suppression group were associated with poorer EF. Given the importance of EF skills for multiple outcomes, and the unique and additional EF demands specific to transgender youths’ experiences, EF skill monitoring—and when appropriate, supports—should be considered for transgender youth.

Patients with childhood, adolescent, and young adult cancer who will be treated with gonadotoxic therapies are at increased risk for infertility. Many patients and their families desire biological children but effective communication about treatment-related infertility risk and procedures for fertility preservation does not always happen. The PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group reviewed the literature and developed a clinical practice guideline that provides recommendations for ongoing communication methods for fertility preservation for patients who were diagnosed with childhood, adolescent, and young adult cancer at age 25 years or younger and their families. Moreover, the guideline panel formulated considerations of the ethical implications that are associated with these procedures. Grading of Recommendations Assessment, Development and Evaluation methodology was used to grade the evidence and recommendations. In this clinical practice guideline, existing evidence and international expertise are combined to develop transparent recommendations that are easy to use to facilitate ongoing communication between health-care providers and patients with childhood, adolescent, and young adult cancer who might be at high risk for fertility impairment and their families.

Background: Uptake of genetic testing for heritable conditions is increasingly common. In families with known autosomal dominant genetic cancer predisposition syndromes (CPS), testing youth may reduce uncertainty and provide guidance for future lifestyle, medical, and family building considerations. The goals of this systematic review were to examine: (1) how parents and their children, adolescents, and young adults (CAYAs) communicate and make decisions regarding testing for CPS and (2) how they communicate and make decisions about reproductive health/family building in the context of risk for CPS. Methods: Searches of MEDLINE/Pubmed, CINAHL, Web of Science, and PsycINFO yielded 4161 articles since January 1, 2000, which contained terms related to youth, pediatrics, decision-making, genetic cancer predispositions, communication, and family building. Results: Articles retained (N = 15) included five qualitative, six quantitative, and four mixed-method designs. Parents generally agreed testing results should be disclosed to CAYAs at risk or affected by genetic conditions in a developmentally appropriate manner. Older child age and child desire for information were associated with disclosure. Greater knowledge about risk prompted adolescents and young adults to consider the potential impact on future relationships and family building. Conclusions: Most parents believed it was their responsibility to inform their CAYAs about genetic testing results, particularly to optimize engagement in recommended preventative screening/lifestyle behaviors. Disclosing test results may be challenging due to concerns such as young age, developmental appropriateness, and emotional burden. Additional research is needed on how CPS risk affects CAYAs' decisions about reproductive health and family building over time.

Fertility navigators (FNs) are important in communicating infertility risk and fertility preservation (FP) options to patients receiving gonadotoxic therapies. This retrospective study examined electronic medical records of patients with fertility consults at a large pediatric institution (2017-2019), before and after hiring a full-time FN. Of 738 patient encounters, 173 consults were performed pre-navigator and 565 post-navigator. Fertility consults for long-term follow-up cancer survivors increased most substantially: pre-navigator (n = 7) and post-navigator (n = 387). Across diagnoses, females had a larger increase in consults compared to males (χ

Context Studies on cardiometabolic health in transgender and gender-diverse youth (TGDY) are limited to small cohorts. Objective This work aimed to determine the odds of cardiometabolic-related diagnoses in TGDY compared to matched controls in a cross-sectional analysis, using a large, multisite database (PEDSnet). Methods Electronic health record data (2009-2019) were used to determine odds of cardiometabolic-related outcomes based on diagnosis, anthropometric, and laboratory data using logistic regression among TGDY youth vs controls. The association of gender-affirming hormone therapy (GAHT) with these outcomes was examined separately among TGDY. TGDY (n = 4172) were extracted from 6 PEDSnet sites and propensity-score matched on 8 variables to controls (n = 16 648). Main outcomes measures included odds of having cardiometabolic-related diagnoses among TGDY compared to matched controls, and among TGDY prescribed GAHT compared to those not prescribed GAHT. Results In adjusted analyses, TGDY had higher odds of overweight/obesity (1.2; 95% CI, 1.1-1.3) than controls. TGDY with a testosterone prescription alone or in combination with a gonadotropin-releasing hormone agonist (GnRHa) had higher odds of dyslipidemia (1.7; 95% CI, 1.3-2.3 and 3.7; 95% CI, 2.1-6.7, respectively) and liver dysfunction (1.5; 95% CI, 1.1-1.9 and 2.5; 95% CI, 1.4-4.3) than TGDY not prescribed GAHT. TGDY with a testosterone prescription alone had higher odds of overweight/obesity (1.8; 95% CI, 1.5-2.1) and hypertension (1.6 95% CI, 1.2-2.2) than those not prescribed testosterone. Estradiol and GnRHa alone were not associated with greater odds of cardiometabolic-related diagnoses. Conclusion TGDY have increased odds of overweight/obesity compared to matched controls. Screening and tailored weight management, sensitive to the needs of TGDY, are needed.

Importance Many adolescents and young adults diagnosed with Hodgkin lymphoma (HL) experience disease progression requiring high-dose alkylating salvage therapy, which often results in permanent infertility. Objective The aim of this report is to discuss fertility preservation options in female patients with consideration of chemotherapeutic agents in HL. Evidence acquisition An electronic literature review was performed utilizing a combination of the terms "Hodgkin lymphoma," "fertility preservation," "ovarian tissue cryopreservation," "oocyte cryopreservation," "embryo cryopreservation," and "gonadotropin-releasing hormone agonist." References and data from identified sources were searched and compiled to complete this review. Results Initial treatment of HL is often nonsterilizing; however, salvage therapy and conditioning for stem cell transplantation confer significant gonadotoxicity. Established fertility preservation options for pubertal females include embryo cryopreservation and oocyte cryopreservation. These options are contraindicated within 6 months of receipt of chemotherapy. Ovarian tissue cryopreservation is an option for patients who require salvage therapy within 6 months of first-line therapy. Conclusions Timing and choice of fertility preservation techniques depends on planned first-line chemotherapy and response to treatment. In patients initially treated with low-risk chemotherapy, it is reasonable to defer invasive fertility techniques until treatment failure; however, upfront fertility preservation should be considered in patients planning to undergo primary treatment with high-risk therapy.

Purpose: Approximately half of male childhood cancer survivors experience impaired fertility, which is known to cause psychological distress. Yet, less than 50% of at-risk adolescent and young adult (AYA) males pursue fertility preservation (FP) at diagnosis. Alternatives to biological parenthood (e.g., adoption/sperm donation) may be considered, but little is known about perspectives regarding these alternatives among AYA males and their families. Methods: Families of AYAs were recruited for a mixed-method study examining FP decisions at cancer diagnosis. One month later, 48 participants from 20 families (18 male AYAs, 12–22 years of age, 19 mothers, 11 fathers) completed semistructured interviews, including two questions about: (a) alternative routes to biological parenthood, and (b) their knowledge about the processes involved and/or challenges associated with such alternatives. Verbatim transcripts were coded for thematic content using the constant comparison method. Results: Three main themes were identified, of which two represent both ends of considering alternative parenthood: (a) Willingness to consider alternatives to biological parenthood, primarily adoption; (b) No consideration/discussion of alternative family building options; and (c) Variable knowledge of alternatives and/or associated challenges. Notably, more AYAs than parents mentioned a specific preference for biological children. Conclusions: One-month postcancer diagnosis, most parents reported willingness to consider alternatives to biological parenthood for their sons, while AYA males were less knowledgeable or open to these options. Future research should prospectively examine how these attitudes affect FP decisions before treatment. Medical and psychosocial providers should counsel patients and survivors accordingly to optimize reproductive outcomes and prevent psychosocial distress if parenthood goals are unfulfilled.

The medical terminology applied to differences/disorders of sex development has been viewed negatively by some affected individuals. A clinical population of patients with differences/disorders of sex development and their caregivers were surveyed regarding current nomenclature, hypothesizing that those unaffiliated with support groups would have more favorable attitudes.We recruited English and Spanish speaking patients 13 years old or older with differences/disorders of sex development and their caregivers at 5 national tertiary care clinics from July 2016 to December 2018. No diagnoses were excluded. Participants completed a survey rating terminology commonly applied to differences/disorders of sex development. Responses were compared between subgroups, including members vs nonmembers of a support group.Of 185 potential participants approached 133 completed the survey (72% response rate). Congenital adrenal hyperplasia (33%) was the most common diagnosis. "Variation of sex development" was the most liked term (37%) but was not liked more significantly than "disorders of sex development" (27%, p=0.16). No term was liked by a majority of respondents. "Disorders of sex development" (37%) and "intersex" (53%) were the only terms most frequently viewed unfavorably. Support group members were significantly more likely to dislike the term "intersex" (p=0.02) and to like "variation of sex development" (p=0.02).A clinical population of patients and their caregivers had generally neutral attitudes toward nomenclature applied to differences/disorders of sex development. Members of a support group had clearer terminology preferences. "Variation of sex development" was the most liked term, and "disorders of sex development" and "intersex" were the most disliked. No term was liked by most respondents, and no clear alternative to the present nomenclature was identified.

Impairment of fertility and sexual/reproductive health are common after oncologic therapy, and are known to have negative impacts on romantic relationships and psychosocial well-being among childhood cancer survivors. The Pediatric Initiative Network (PIN) is an international, multidisciplinary group of providers within the Oncofertility Consortium dedicated to preserving and protecting the fertility of children and adolescents at risk for infertility due to medical conditions or treatments. The PIN and its Best Practices and Research committees meet virtually throughout the year, with one annual in-person meeting. The purpose of this “proceedings” is to highlight key discussion points from the annual PIN meeting which took place on November 11, 2019, to 1) provide a context for pediatric groups across the country on what oncofertility programs are currently doing and why, and 2) inform stakeholders of past, present and future initiatives that may be of value to them and the patient populations they serve.

As survival rates for adolescent and young adult (AYA) cancer patients improve, fertility preservation has gained increased attention. Many AYAs report significant concerns about fertility potential after therapy. Preservation at diagnosis may be the only opportunity for future genetic parenthood for many patients. Time constraints, concerns about treatment delays, and difficulty accessing resources are reported as reasons for providers not providing counseling. In addition, some pubertal males are unable/unwilling to produce a sample through self-stimulation. Testicular sperm aspiration/extraction with sperm cryopreservation can be successfully performed in "high-risk" pubertal males with significant barriers to traditional collection before initiation of emergent chemotherapy.

Objective: Delayed puberty is a common condition, and typical management includes "watchful waiting" and/or sex-steroid therapy. We sought to characterize treatment practices and to assess provider comfort with the management of delayed puberty in girls and boys. Methods: A national survey of pediatric endocrine providers assessed definitions of delayed puberty, practices around sex-steroid therapy, reasons for treatment, and comfort in managing delayed puberty in girls and boys. Results: Of 184 respondents (12% participation rate), 64% and 71% used the traditional age cutoffs for defining delayed puberty of 13 years for girls and 14 years for boys, respectively. Nearly half (45%) of providers would treat boys relatively earlier than girls, compared to 18% who would treat girls relatively earlier (P

Context Diabetes and cardiovascular diseases are common among men with Klinefelter syndrome (KS) and contribute to high morbidity and mortality. Objective To determine if cardiometabolic-related diagnoses are more prevalent among youth with KS than matched controls in a large population-based cohort. Methods Secondary data analysis of electronic health records from 6 pediatric institutions in the United States (PEDSnet). Patients included all youth with KS in the database (n = 1080) and 4497 youth without KS matched for sex, age (mean 13 years at last encounter), year of birth, race, ethnicity, insurance, site, and duration of care (mean 7 years). The main outcome measures were prevalence of 5 cardiometabolic-related outcomes: overweight/obesity, dyslipidemia, dysglycemia, hypertension, and liver dysfunction. Results The odds of overweight/obesity (OR 1.6; 95% CI 1.4-1.8), dyslipidemia (3.0; 2.2-3.9), and liver dysfunction (2.0; 1.6-2.5) were all higher in KS than in controls. Adjusting for covariates (obesity, testosterone treatment, and antipsychotic use) attenuated the effect of KS on these outcomes; however, boys with KS still had 45% greater odds of overweight/obesity (95% CI 1.2-1.7) and 70% greater odds of liver dysfunction (95% CI 1.3-2.2) than controls, and both dyslipidemia (1.6; 1.1-2.4) and dysglycemia (1.8; 1.1-3.2) were higher in KS but of borderline statistical significance when accounting for multiple comparisons. The odds of hypertension were not different between groups. Conclusion This large, population-based cohort of youth with KS had a higher odds of most cardiometabolic-related diagnoses than matched controls.

Sexual health may be disrupted in adolescents and young adults (AYAs) both during and after cancer treatment, irrespective of whether they are diagnosed in childhood, adolescence, or young adulthood. Unfortunately, oncology providers often underestimate the relevance of psychosexual issues for AYAs and underprioritize sexual health throughout treatment and survivorship. The purpose of this narrative review is to provide information on (a) the etiology of psychosexual dysfunction in childhood, adolescent, and young adult cancer patients and young adult survivors of childhood cancer; (b) strategies for communicating and evaluating potential sexual health issues of AYA patients/survivors; and (c) guidance for the practicing pediatric oncologist on how to address sexual health concerns with patients.

Limited data are available on changes in metabolic parameters in transgender youth on testosterone therapy in comparison with cisgender females. Data from 42 transgender males on testosterone therapy were retrospectively analyzed. Body mass index (BMI) and lipid profile changes were compared with BMI-matched females. There was a significant increase in BMI over time in the transgender males as compared with the cisgender females, and a decrease in high-density lipoprotein in the transgender males after starting testosterone therapy. Longitudinal prospective studies with cisgender controls are needed to better define effects of testosterone therapy in adolescents.

Purpose Young individuals face a variety of developmental tasks as they mature into adulthood. For survivors of childhood cancer, growing up may be more difficult due to their illness and late effects from treatment. This study is the first to quantitatively examine perceptions of maturity and how these perceptions contribute to satisfaction with life among young adult survivors of childhood cancer. Methods Ninety survivors of childhood cancer (Mage = 29.8; 7–37 years post-diagnosis) were recruited to complete online surveys on how mature they felt relative to peers, their perceived maturity on three domains (financial, personal, social), and life satisfaction. Results Most survivors (62%; n = 56) felt they grew up faster than their peers, and over half (56%; n = 50) felt more mature. Perceived maturity was high on all three domains, but brain tumor survivors reported significantly lower maturity than other survivors (d = 0.76–1.11). All maturity domains were positively associated with life satisfaction (r = .49–.56). Hierarchical linear regressions indicated that 44% of the variance in life satisfaction was explained by perceptions of growing up slower (β = − 1.08, p = .004) and marginally by greater perceived personal maturity (β = 0.45, p = .061). Conclusions Childhood cancer can influence development, with most survivors feeling that they grew up faster and were more mature than peers. Personal maturity was related to life satisfaction, with survivors of brain tumors or those who felt they grew up slower at greatest risk for lower life satisfaction. Future research and clinical practice should consider survivors’ development and maturation across the life span to promote overall well-being.

PURPOSE: Pediatric cancer survivors may have lower quality of life (QoL), but most research has assessed outcomes either in treatment or long-term survivorship. We focused on early survivorship (i.e., three and five years post-diagnosis), examining the impact of CNS-directed treatment on child QoL, as well as sex and age at diagnosis as potential moderators. METHODS: Families of children with cancer (ages 5–17) were recruited at diagnosis or relapse (N=336). Survivors completed the PedsQL at three (n=96) and five (n=108) years, along with mothers (101 & 105, respectively) and fathers (45 & 53, respectively). The impact of CNS treatment, sex, and age at diagnosis on child QoL was examined over both time since diagnosis and time since last treatment using mixed model analyses. RESULTS: Parent-report of the child’s total QoL was in the normative range and stable between three and five years when examining time since diagnosis, while child reported QoL improved over time (p=0.04). In terms of time since last treatment, mother and child both reported the child’s QoL improved over time (p=0.0002 and p=0.0006, respectively). Based on parent-report, males with CNS-directed treatment had lower total QoL than females and males who did not receive CNS-directed treatment. Age at diagnosis did not moderate the impact of treatment type on total QoL. CONCLUSIONS: QoL in early survivorship may be low among males who received CNS-directed treatment. However, this was only evident on parent-report. Interventions to improve child QoL should focus on male survivors who received CNS-directed treatment, as well as females regardless of treatment type.

Objective Approximately half of male childhood cancer survivors experience impaired fertility, yet fertility preservation (FP) remains underutilized. Although parent recommendation influences adolescents’ decision-making, parents may be uncertain and/or underrate their sons’ parenthood goals. This study assessed parent–adolescent and family-level concordance regarding adolescent fertility perspectives (i.e., values, goals) and associations with FP attempts. Methods A prospective pilot study examined the impact of a family-centered values clarification tool (FAST) on banking attempts among adolescent males newly diagnosed with cancer at risk for infertility. The FAST assessed adolescent and parent perceptions of adolescents’ fertility values and goals (i.e., perceived threat of infertility, perceived benefits/barriers to banking). Parent–adolescent concordance and family-level concordance on fertility perspectives were examined, along with associations with banking attempts and salient demographic factors. Results Ninety-eight participants (32 adolescents aged 12–20, 37 mothers, 29 fathers) from 32 families completed the FAST before treatment initiation. Parent–adolescent dyads were concordant on approximately one-half of responses. Banking attempts were associated with higher family-level concordance regarding perceived benefits, r(32) = .40, p = .02. Older adolescent age was associated with higher family-level concordance regarding perceived threat, r(31) = .37, p = .04, and benefits, r(32) = .40, p = .03. Fathers’ education was associated with higher family-level concordance regarding barriers, r(21) = .53, p = .01. Conclusions When parents were concordant with their son’s fertility values and goals, particularly perceived benefits, adolescents were more likely to attempt FP. Clinicians should facilitate sharing of fertility perspectives within families before cancer treatment, especially with younger adolescents. Psychosocial support for families facing FP decisions is recommended at diagnosis and across the care continuum.

Purpose: Approximately half of all males experience fertility impairment after cancer treatment, which can diminish quality of life. Parents are often responsible for sharing health-related informa...

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.A 46-item survey was distributed to relevant listservs and at conferences with a focus on transgender health.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].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.

Background Reproductive health counseling is essential for adolescents and young adults (AYAs). Transgender and gender diverse (TGD) AYAs would benefit from tailored counseling given concerns about iatrogenic infertility and sexual dysfunction, and high rates of interpersonal violence, unplanned pregnancies and sexually transmitted infections, yet there are multiple obstacles to providing this care at the patient/family and clinician levels. Objectives This narrative review summarizes the literature on reproductive health considerations for TGD AYAs, current practices, and clinician barriers and facilitators to providing culturally sensitive reproductive care for TGD AYAs. Specific areas of focus include reproductive health goals, risks, and access barriers; clinician knowledge practices and challenges; and strategies for improving counseling practices. Materials and methods PubMed, Google Scholar, Medline, Web of Science, and PsycInfo databases were searched using the following terms: transgender, non-binary, gender expansive, gender non-conforming, reproductive health, sexual health, fertility, family planning/building, contraception, sexual dysfunction; gender-affirming hormones/surgery, clinician, physician or provider knowledge and attitudes; counseling. Results Many TGD AYAs desire biological children and improved sexual experiences. TGD AYAs may experience infertility and sexual dysfunction associated with transition; have disproportionate HIV/STI risk; experience high rates of interpersonal/sexual violence and trauma; and encounter barriers to accessing competent medical care. Clinicians lack knowledge about reproductive health needs of TGD AYAs; inconsistently discuss family building options; perceive counseling challenges; and desire more training in this area. Discussion Enriched communication training for medical/mental health clinicians is necessary to provide a skilled workforce for TGD AYAs. Web-based reproductive health training with other populations (eg oncology) demonstrates efficacy for improving communication skills and confidence in counseling, CONCLUSION: This review highlights barriers to adequate reproductive care encountered by TGD AYAs, exacerbated in underserved minority youth. Dedicated training for providers, and programs increasing access are important goals for improving care. The need for additional research is also emphasized.

Objective Many transgender adolescents experience clinically elevated anxiety and depression. Testosterone (T), used as a gender affirming treatment, may reduce symptoms of anxiety and depression. We assessed the effect of gender affirming T treatment on internalizing symptoms, body image dissatisfaction, and activation patterns within the amygdala-prefrontal cortex circuit in transgender adolescent boys. Method Symptoms of generalized anxiety, social anxiety, depression, suicidality and body image dissatisfaction were measured by self-report and brain activation was measured during a face processing task with functional MRI in a group of 19 adolescent transgender boys receiving T treatment and 23 not receiving gonadal hormone treatment (UT). Results Severity of anxiety and depression was significantly lower in the T treated group relative to the UT group, along with a trend of lower suicidality. The T group also reported less distress with body features and exhibited stronger connectivity within the amygdala-prefrontal cortex circuit compared to the UT group. Finally, group differences on depression and suicidality were directly associated with body image dissatisfaction, and anxiety symptoms were moderated by amygdala-prefrontal cortex connectivity differences between groups. Conclusion T treatment is associated with lower levels of internalizing symptoms among transgender adolescent boys. T is also associated with greater body satisfaction and greater connectivity in a neural circuit associated with anxiety and depression. Satisfaction with body image was found to overlap with the association between T and both depression and suicidality, and amygdala-prefrontal co-activation moderated the role of T on anxiety.

Introduction: International Turner syndrome (TS) Clinical Practice Guidelines recommend screening for neurodevelopmental (ND) and mental health (MH) concerns in girls with TS; however, it remains unclear whether this is implemented in current practice. The objective of this mixed methods study was to assess screening practices for ND and MH in girls with TS from the perspective of pediatric endocrinologists. Methods: Pediatric Endocrine Society members who provide care for girls with TS were invited to complete an electronic survey on screening practices. Descriptive statistics were used to summarize quantitative results concurrently with thematic analysis of free-text survey responses. Results: A total of 124 surveys were completed (86% attending pediatric endocrinologists, 81% at academic institutions). Overall, 25% of providers reported their patients with TS received both ND and MH screenings. Only 9 (9%) respondents endorsed screening for ND concerns themselves, while more providers (26%) reported they screen for MH concerns. Multiple barriers to screening for ND and MH concerns within the clinical setting were endorsed. Nearly all providers (>93%) reported they would consider using a short, validated screening tool for ND and MH concerns if such tools were available. Discussion: A minority of pediatric endocrinologists currently perform ND or MH screening for patients with TS, however, many would be interested in implementing a brief screening tool into their clinical practice. Given almost all girls with a TS diagnosis receive care from pediatric endocrinologists at least annually, this may be an effective method to increase the proportion of girls with TS who receive recommended screenings.

PURPOSE: Over half of males experience fertility impairment after childhood cancer therapy, which often causes psychosocial distress. Yet, fertility preservation (FP) remains underutilized. The goals of this study were to determine the feasibility and impact of implementing a family-centered FP values clarification tool on sperm banking attempts among adolescent males newly diagnosed with cancer, and identify key determinants of banking attempts. METHODS: A prospective pilot study was conducted among families of males (12–25 years old), prior to cancer therapy. Thirty-nine of 41 families agreed to participate (95%); 98 participants (32 adolescents, 37 mothers, 29 fathers) completed the Family-centered Adolescent Sperm banking values clarification Tool (FAST). Analyses assessed the impact of the FAST on banking attempts and examined associations between demographic/medical characteristics, FAST subscales (perceived threat, benefits, barriers), and banking attempts. RESULTS: Twenty-three (59%) adolescents attempted to bank, compared to 8 adolescents (33%) during baseline assessment (p=.04). Significant associations were identified between banking attempts and adolescents’ report of perceived threat (r(pb)=.45, p=.01) and benefits (r(pb)=.57, p=.01). Only mothers’ proxy reports of adolescent perceived threat (r(pb)=.42, p=.01) and benefits (r(pb)=.47, p=.003) were associated with banking attempts, while fathers’ self-reported perceived benefits (r(pb)=.43, p=.03), self-reported barriers (r(pb)=.49, p=.01), and proxy reports of adolescent perceived threat (r(pb)=.38, p=.04) and benefits (r(pb)=.59, p=.02) were associated with banking attempts. CONCLUSION: Adolescent sperm banking attempt rates significantly increased after implementation of a family-centered FP values clarification tool prior to cancer treatment. Findings underscore the importance of targeting both adolescents and their parents, particularly fathers, in FP efforts.