The Influence of Adolescence on Parents' Perspectives of Testing and Discussing Inherited Cancer Predisposition.

Li-Fraumeni syndrome (LFS) is a highly penetrant cancer predisposition syndrome that may present with a first cancer before or during adolescence/young adulthood. Families offered LFS genetic testing for their children can inform our understanding of how the unique developmental context of adolescence influences parental perspectives about genetic testing and discussions of cancer risk. In this study, semi-structured interviews were conducted with 46 parents of children at risk for LFS to capture those perspectives. Analysis utilized summary descriptive statistics and inductive qualitative content coding. Most parents (33/46; 72%) expressed beliefs that adolescence influences the importance of LFS testing and/or discussions about genetic risk. Twenty-six parents related this influence to cognitive, physical, and social changes occurring during adolescence. Aspects of adolescence perceived as promoting LFS testing/discussion included developmental appropriateness, risks of cancer in adolescence, need for medical screening decisions, influence on behaviors, transition to adult health care, and reproductive risks. Aspects of adolescence perceived as complicating LFS testing/discussions included potential negative emotional impact, misunderstanding, added burden, and negative impact on self-image or future planning. Parents recognize the complex influence that adolescence has on LFS testing and conversations surrounding results. Further research is needed to understand the actual impact of genetic testing on young people, and how to best support parents and adolescents within the broader context of heritable diseases.

The development and implementation of theory-driven programs capable of addressing poverty-impacted children's health, mental health, and prevention needs: CHAMP and CHAMP+, evidence-informed, family-based interventions to address HIV risk and care.

This article describes a program of prevention and intervention research conducted by the CHAMP (Collaborative HIV prevention and Adolescent Mental health Project; McKay & Paikoff, 2007 ) investigative team. CHAMP refers to a set of theory-driven, evidence-informed, collaboratively designed, family-based approaches meant to address the prevention, health, and mental health needs of poverty-impacted African American and Latino urban youth who are either at risk for HIV exposure or perinatally infected and at high risk for reinfection and possible transmission. CHAMP approaches are informed by theoretical frameworks that incorporate an understanding of the critical influences of multilevel contextual factors on youth risk taking and engagement in protective health behaviors. Highly influential theories include the triadic theory of influence, social action theory, and ecological developmental perspectives. CHAMP program delivery strategies were developed via a highly collaborative process drawing upon community-based participatory research methods in order to enhance cultural and contextual sensitivity of program content and format. The development and preliminary outcomes associated with a family-based intervention for a new population, perinatally HIV-infected youth and their adult caregivers, referred to as CHAMP+, is described to illustrate the integration of theory, existing evidence, and intensive input from consumers and healthcare providers.

Clinical Course of Transgender Adolescents with Complicated Postural Orthostatic Tachycardia Syndrome Undergoing Hormonal Therapy in Gender Transition: A Case Series.

Purpose: Postural orthostatic tachycardia syndrome (POTS), an increasingly recognized dysautonomia, may affect as many as 3,000,000 Americans. Concurrently, prevalence estimates suggest 10% of individuals identify as lesbian, gay, bisexual, transgender, or questioning/queer. The preponderance of female POTS patients implies hormonal differences between natal sexes and their role in POTS. Transgender POTS patients using hormone therapies may offer further insight into the mechanism of POTS. There have been no previously published studies of transgender patients with POTS undergoing gender-affirming hormone therapy. Methods: We reviewed our electronic health record for clinical histories of transgender patients in our POTS Database. Results: Three patients who transitioned from female to male demonstrated clinical improvement of their POTS symptoms with the addition of testosterone therapy. Conclusion: We present our clinical experience of three transgender POTS patients who transitioned from female to male with hormone therapy, all of whom demonstrated clinical improvement with testosterone. This may give further insight into the pathophysiology of POTS. However, the authors do not endorse the use of hormone therapy as primary therapy for the symptoms of POTS.

Body Image and Eating Disorders Among Lesbian, Gay, Bisexual, and Transgender Youth.

Adolescence is a crucial period for emerging sexual orientation and gender identity and also body image disturbance and disordered eating. Body image distortion and disordered eating are important pediatric problems affecting individuals along the sexual orientation and gender identity spectrum. Lesbian, gay, bisexual, transgender (LGBT) youth are at risk for eating disorders and body dissatisfaction. Disordered eating in LGBT and gender variant youth may be associated with poorer quality of life and mental health outcomes. Pediatricians should know that these problems occur more frequently in LGBT youth. There is evidence that newer treatment paradigms involving family support are more effective than individual models of care.

Creating Welcoming Spaces for Lesbian, Gay, Bisexual, and Transgender (LGBT) Patients: An Evaluation of the Health Care Environment.

Health outcomes are affected by patient, provider, and environmental factors. Previous studies have evaluated patient-level factors; few focusing on environment. Safe clinical spaces are important for lesbian, gay, bisexual, and transgender (LGBT) communities. This study evaluates current models of LGBT health care delivery, identifies strengths and weaknesses, and makes recommendations for LGBT spaces. Models are divided into LGBT-specific and LGBT-embedded care delivery. Advantages to both models exist, and they provide LGBT patients different options of healthcare. Yet certain commonalities must be met: a clean and confidential system. Once met, LGBT-competent environments and providers can advocate for appropriate care for LGBT communities, creating environments where they would want to seek care.