Defining Success in the Delivery of Fertility-Related Care for Patients with Differences of Sex Development.

Introduction: Individuals with differences of sex development (DSD) experience complex, often competing, medical and psychosocial challenges surrounding fertility. The study aimed to characterize how "success" in fertility-related care is conceptualized and attained among individuals with a DSD, their parents or caregivers, healthcare providers, and other stakeholders.

Methods: As part of a larger study, DSD stakeholders (n = 110) participated in semi-structured interviews covering the clinical care of patients with DSD.

Preferences in Clinical Care of Individuals With Differences of Sex Development.

Objectives: To identify the most important attributes related to the process of achieving, and outcomes associated with, successful care for differences of sex development (DSD).

Methods: We developed a best-worst scaling survey administered to 520 DSD stakeholders, including individuals or family members of those with DSD, health care specialists, and patient support and advocacy representatives. Fourteen process-related attributes and 16 outcome-related attributes were identified through qualitative research.

Decisional Support Needed when Facing Tough Decisions: Survey of Parents with Children having Differences of Sex Development.

Introduction: Parents of infants and young children newly diagnosed with differences of sex development (DSD) commonly face medical and psychosocial management decisions at a time when they are first learning about the condition and cannot consult their child for input. The aim of this study was to identify areas of greatest need for parental decisional support.

Methods: 34 parents of children receiving care for DSD at one of three US children's hospitals participated in a survey to learn what clinical and psychosocial decisions needed to be made on behalf of their child.

Surgical Decision-Making for Individuals with Differences of Sex Development: Stakeholders' views.

Introduction: Advocacy and human rights organizations have called for a moratorium on elective surgical procedures until the patient is able to fully participate in the decision-making process. Due to the controversial nature surrounding surgery in differences of sex development (DSD) care, we aimed to assess the factors that teens and adults with DSD, parents, healthcare providers and other allied professionals consider pertinent to complex surgical decisions in DSD.

Methods: Stakeholders (n=110) in DSD care participated in semi-structured interviews exploring features and potential determinants of successful healthcare outcomes.

"It became easier once I knew": Stakeholder perspectives for educating children and teenagers about their difference of sex development.

Objective: Secrecy about a child's difference of sex development (DSD) can lead to internalized shame and stigma. We explored how teenagers and adults with DSD, parents, healthcare providers, and allied professionals value and perceive patient education.

Methods: Stakeholders (n = 110) completed qualitative semi-structured interviews.

Defining successful outcomes and preferences for clinical management in differences/disorders of sex development: Protocol overview and a qualitative phenomenological study of stakeholders' perspectives.

Introduction: Utilizing a qualitative phenomenological design, the Defining Successful Outcomes and Trade-offs study examined stakeholder perspectives regarding optimal healthcare delivery and outcomes for individuals with a difference/disorder of sex development (DSD).

Objective: We describe study methods and provide an overview of themes and subthemes.

Study Design: Interviews were conducted with individuals with a DSD (n = 24), parents of those with a DSD (n = 19), healthcare providers (n = 37), and others (n = 30).

Youth sports participation and health status in early adulthood: A 12-year follow-up.

Examining association between serial participation in youth organized sports (OS) and concurrent cardiometabolic risk factors, with long-term health status, will aid understanding the role of OS participation. Combining data from a prospective study and a follow-up survey, we aimed to determine association between youth OS participation and cardiometabolic risk factors with health and physical activity (PA) in young adulthood. Cardiometabolic risk factors were monitored yearly, and OS involvement through middle school, high school, and college, together with current status was recorded 12 years after the initial study began; 462 participants completed follow-up.

The National Physicians Cooperative: transforming fertility management in the cancer setting and beyond.

Once unimaginable, fertility management is now a nationally established part of cancer care in institutions, from academic centers to community hospitals to private practices. Over the last two decades, advances in medicine and reproductive science have made it possible for men, women and children to be connected with an oncofertility specialist or offered fertility preservation soon after a cancer diagnosis. The Oncofertility Consortium's National Physicians Cooperative is a large-scale effort to engage physicians across disciplines - oncology, urology, obstetrics and gynecology, reproductive endocrinology, and behavioral health - in clinical and research activities to enable significant progress in providing fertility preservation options to children and adults.

Perceived socioeconomic status: a new type of identity that influences adolescents' self-rated health.

Purpose: The cognitive, social, and biological transitions of adolescence suggest that subjective perceptions of social position based on the socioeconomic hierarchy may undergo important changes during this period; yet how such perceptions develop is poorly understood, and no studies have assessed whether changes in such perceptions influence adolescents' health. This study describes adolescents' subjective perceptions of familial socioeconomic status (SSS), how SSS changes over time, and how age, race, and objective socioeconomic status (SES) indicators influence SSS. In addition, the study determines whether SSS independently influences adolescents' self-rated health, an important predictor of morbidity and health service use.

Social disadvantage and adolescent stress.

Purpose: Low socioeconomic status (SES) and minority race/ethnicity are both associated with chronic stress and co-vary in American society. As such, these factors are often used synonymously, without clear theoretical conceptualization of their roles in the development of stress-related health disparities. This study theorized that race/ethnicity and SES reflect social disadvantage, which is the underlying factor in the development of stress-related illness, and examined how social disadvantage, defined in terms of both race/ethnicity and SES, influences adolescents' stress.