Implementation of type 1 diabetes genetic risk screening in children in diverse communities: the Virginia PrIMeD project.

BACKGROUND: Population screening for risk of type 1 diabetes (T1D) has been proposed to identify those with islet autoimmunity (presence of islet autoantibodies). As islet autoantibodies can be transient, screening with a genetic risk score has been proposed as an entry into autoantibody testing. METHODS: Children were recruited from eight general pediatric and specialty clinics across Virginia with diverse community settings. Recruiters in each clinic obtained informed consent/assent, a medical history, and a saliva sample for DNA extraction in children with and without a history of T1D. A custom genotyping panel was used to define T1D genetic risk based upon associated SNPs in European- and African-genetic ancestry. Subjects at "high genetic risk" were offered a separate blood collection for screening four islet autoantibodies. A follow-up contact (email, mail, and telephone) in one half of the participants determined interest and occurrence of subsequent T1D. RESULTS: A total of 3818 children aged 2-16 years were recruited, with 14.2% (n = 542) having a "high genetic risk." Of children with "high genetic risk" and without pre-existing T1D (n = 494), 7.0% (34/494) consented for autoantibody screening; 82.4% (28/34) who consented also completed the blood collection, and 7.1% (2/28) of them tested positive for multiple autoantibodies. Among children with pre-existing T1D (n = 91), 52% (n = 48) had a "high genetic risk." In the sample of children with existing T1D, there was no relationship between genetic risk and age at T1D onset. A major factor in obtaining islet autoantibody testing was concern over SARS-CoV-2 exposure. CONCLUSIONS: Minimally invasive saliva sampling implemented using a genetic risk score can identify children at genetic risk of T1D. Consent for autoantibody screening, however, was limited largely due to the SARS-CoV-2 pandemic and need for blood collection.

Transgender and Gender Diverse Fertility Choices: Supporting the Decision-Making Process for Adolescents and Young Adults.

OBJECTIVE: To qualitatively examine the fertility-related decision making process of transgender and gender diverse (TGD) adolescents and young adults (AYAs) and their parents, in the setting of pursing gender affirming treatments. STUDY DESIGN: Twenty-five TGD AYAs and 6 parents of TGD AYAs participated in a focus group or individual semistructured interviews focused on participants' experience learning about the effects of gender affirming treatments on fertility as well as the process of making a fertility preservation decision. Using open coding, data were analyzed in an iterative process identifying emerging themes and relationships. A decisional satisfaction score was collected and/or coded for each participant. RESULTS: Four broad themes related to the decision-making process were identified: (1) Critical steps include awareness, gathering information, and conversations; (2) External constraints limit choices; (3) Expanding the conversation beyond preservation; and (4) Emotional distress, conflict, and decisional satisfaction. Despite reporting emotional distress or conflict during the decision, TGD AYAs and parents of TGD AYAs generally reported a high level of satisfaction with their fertility preservation decision. CONCLUSIONS: There are specific ways health care professionals and family members can support TGD AYAs in their fertility-related decision making process. Decisional satisfaction was common, regardless of whether TGD AYAs chose to pursue fertility preservation or not.

Patterns of Fertility Discussions and Referrals for Youth at an Interdisciplinary Gender Clinic.

Purpose: We examined fertility discussion and referral practice patterns in a gender clinic serving nonmetropolitan youth. Methods: Chart review collected data on demographics, gender-related health care visits, and fertility discussions and referrals from January 2010 to December 2017, inclusive. Results: Of 66 patients, 78.8% had at least one documented fertility discussion. Eleven patients received referrals and 2 successfully preserved gametes. Neither location of primary residence (county vs. city) nor distance driven to the clinic were significantly associated with a documented fertility discussion or referral. Conclusion: Most youth discussed fertility, but declined preservation. Further research on provider- and patient-specific factors affecting preservation decisions is needed.

Leveraging a relationship-based sexual health framework for sexual risk prevention in adolescent men in the United States.

Background Studies link sexual health to lower sexual risk in adolescent women, yet no empirical literature evaluates these associations in adolescent men. METHODS: Data were drawn from a longitudinal cohort study of sexual relationships and sexual behaviour among adolescent men (n=72; 14-16 years) in the US. Participants contributed quarterly partner-specific interviews, from which sexual health information and partnered sexual behaviours were drawn. A multidimensional measure of sexual health was constructed and linked to partnered outcomes, including oral-genital, vaginal and anal sex, condom use, partner concurrency and intimate partner violence. Random intercept, mixed-effects linear, ordinal logistic or binary logistic regression were for analyses. Models controlled for participant age, race/ethnicity and relationship length. RESULTS: Adolescent men contributed 651 unique partner-specific interviews. A higher sexual health score with partners was significantly associated with more frequent oral-genital and vaginal sex, as well as higher condom use, lower partner concurrency and lower received and perpetuated intimate partner violence. CONCLUSION: Positive sexually related experiences in adolescent men contribute to a core of sexual wellbeing, which in turn is linked to lower levels of sexual risk with partners. The present study data support both developmental and public health applications of sexual health, with attention on promoting healthy sexuality as well as risk reduction. Higher sexual health among adolescent men from the US is associated with more frequent condom use, lower partner concurrency and less frequent intimate partner violence. Young men's exercising the skills associated with healthy sexuality may also reinforce the skills needed to both enjoy sexuality with partners and to avoid adverse sexual outcomes.

Ethical Barriers in Adolescent Oncofertility Counseling.

Adult survivors of pediatric cancers are at substantial risk for infertility. Oncofertility is an emerging field in medicine that has focused on the fertility preservation of these patients. As the field continues to develop, there are several areas in which our practice has improved. However, several ethical concerns still exist involving beneficence, nonmaleficence, informed consent, adolescent assent, and posthumous use of reproductive tissues. Because the field is still developing, great disparities exist in available options depending on age, ability to pay, and geographic location. Such discrepancies in access may lead to health disparities in the adolescent patient population. As the science continues to make future fertility more feasible, the ethical questions will continue to be more complex. The purpose of this article is to review some of the developments regarding oncoferility and address future directions for research and inquiry in specific areas.

Four steps to preserving adolescent confidentiality in an electronic health environment.

PURPOSE OF REVIEW: Best practices in adolescent care require the ability to provide confidential services, particularly for reproductive health care. As systems implement electronic health records and patients use health portals to access information and communicate with their healthcare team, special attention should be paid to protection of adolescent confidentiality in the electronic environment. RECENT FINDINGS: Professional organizations have issued guidance for electronic health records and portal use, but implementation has varied widely between systems, with multiple risks for breaches of confidentiality. Despite interest from patients and families, adolescent health portal use remains low. SUMMARY: Understanding the legal and electronic environments in which we care for adolescent patients allows us to educate, advocate, and implement our electronic tools in a way that respects our adolescent patients' need for confidential care, the importance of their caregivers in promoting their health, and the legal rights of both.

Fertility Preservation after a Cancer Diagnosis: A Systematic Review of Adolescents', Parents', and Providers' Perspectives, Experiences, and Preferences.

STUDY OBJECTIVE: Survival into adulthood is now a reality for many adolescents facing cancer. Fertility preservation (FP) is rapidly advancing, but oncology providers and health systems struggle to incorporate the newest FP technologies into the clinical care of adolescents. Our objective was to systematically review and synthesize the available data regarding the perspectives, experiences, and preferences of adolescents, parents, and oncology providers about FP to inform clinical implementation of FP technologies. DESIGN, SETTING, PARTICIPANTS, INTERVENTIONS, AND MAIN OUTCOME MEASURES: Five electronic databases (PubMed, Embase, Web of Knowledge, Cumulative Index to Nursing and Allied Health Literature, PsychInfo) were systematically searched for studies published between January 1999 and May 2014. Adolescents were defined as 12-18 years at the time of diagnosis or designated as pubertal/postpubertal and younger than 18 years of age. Studies were assessed for methodological quality, data were extracted using a standardized form, and results were synthesized using guidelines for a narrative syntheses of quantitative and qualitative data. RESULTS: In total, 1237 records were identified, with 22 articles, representing 17 unique studies that met the inclusion criteria. The following topics were consistently observed across studies and populations: (1) fertility in trust; (2) decision-making challenges; (3) provider knowledge and practices; and (4) discrepancies between desired and actual experiences. CONCLUSION: Despite the challenges associated with a new cancer diagnosis, adolescents and parents value the opportunity to discuss fertility concerns and preservation options. Providers play an important role in addressing these topics for families and efforts should be made to incorporate FP discussions into routine cancer care for all adolescents, with attention paid to the unique needs of adolescents and their parents.