Abstract Background Clinical research on psychological aspects of disorders sex development (DSD) has focused psychosexual differentiation with relatively little attention directed toward parents' experiences early clinical management and their influence patient family psychosocial adaptation. Objectives To characterize parental in the care children born DSD. Study Design Content analysis interviews parents (n = 41) 28 children, newborn to 6 years, Results Four major domains emerged as...

Disorders of sex development (DSD) are congenital conditions in which chromosomal, gonadal, or anatomic is atypical. DSD-associated stigma purported to threaten positive psychosocial adaptation. Parental perceptions DSD-related were assessed 154 parents 107 children (newborn–17 years) questionnaire comprising two scales, child-focused and parent-focused, three subscales, perceived stigmatization, future worries, feelings about the child’s condition. Medical chart excerpts identified...

Scientific discovery and clinical management strategies for Disorders/Differences of Sex Development (DSD) have advanced in recent years. The 2006 Consensus Statement on Management Intersex Disorders stated that a mental health component to care is integral promote positive adaptation, yet the parameters this element not been described. objective paper threefold: describe psychosocial screening protocol adopted by centers DSD-Translational Research Network; summarize data collected at 1 10...

Following the principles of care recommended in 2006 Consensus Statement on Disorders Sex Development (DSD), along with input from representatives peer support and advocacy groups, this study surveyed DSD clinical management practices at healthcare facilities United States. are congenital conditions which development chromosomal, gonadal, or anatomic sex is atypical. Facilities providing for patients were targeted participation. Specialty providers completed a survey questions six broad...

Surgical management of disorders sex development (DSD) is associated with contentious debate between and within stakeholder communities. While the intent surgical genitals gonads to benefit patient physically psychosocially, these goals have not always been achieved; reports harm surfaced. Harm experienced by some patients has resulted in emergence an activist platform calling for a moratorium on all procedures during childhood – excepting those forestalling threats life years. This ban...

Abstract Several aspects of clinical management 46,XX congenital adrenal hyperplasia (CAH) remain unsettled and controversial. The North American Disorders/Differences Sex Development (DSD) Clinician Survey investigated changes, over the last two decades, in recommendations by specialists involved newborns with DSD. Members (Lawson Wilkins) Pediatric Endocrine Society Societies for Urology participated a web-based survey at three timepoints: 2003–2004 (T1, n = 432), 2010–2011 (T2, 441), 2020...

Genital surgery in children with ambiguous or atypical genitalia has been marred by controversies about the appropriateness and timing of surgery, generating clinical uncertainty decision making. Since 2006, medical experts patient advocates have argued for putting child's needs central as patient-centered care. Based on audio recordings 31 parent-clinician interactions three clinics disorders sex development, we analyze how parents clinicians decide genital surgery. We find that aim...

Introduction Advocacy and human rights organizations have called for a moratorium on elective surgical procedures until the patient is able to fully participate in decision-making process. Due controversial nature surrounding surgery differences of sex development (DSD) care, we aimed assess factors that teens adults with DSD, parents, healthcare providers other allied professionals consider pertinent complex decisions DSD. Methods Stakeholders (n=110) DSD care participated semi-structured...

<b><i>Background/Aims:</i></b> Disorders of sex development (DSD) are congenital conditions in which chromosomal, gonadal, or anatomic is atypical. Optimal management patient- and family-centered delivered by interdisciplinary teams. The present pilot study elicits concerns held important stakeholders on issues affecting young patients with DSD their families. <b><i>Methods:</i></b> Content from focus groups expert clinicians (pediatric...

Research in disorders of sex development (DSD) is hindered by a lack standardized measures sensitive to the experiences affected children and families. We developed evaluated parent proxy (children 2-6 years) self-report ≤6 health-related quality life (HRQoL) instruments for DSD.Items were derived from focus groups open-ended interviews. Clarity comprehensiveness assessed with cognitive Psychometric properties examined field survey 94 families.Measures demonstrated adequate good...

Utilization of a psychosocial screener to identify families affected by disorder/difference sex development (DSD) and at risk for adjustment challenges may facilitate efficient use team resources optimize care. The Psychosocial Assessment Tool (PAT) has been used in other pediatric conditions. current study explored the reliability validity PAT (modified within DSD population; PAT-DSD).Participants were 197 enrolled DSD-Translational Research Network (DSD-TRN) who completed PAT-DSD during...

Based on audio recordings of consultations in three U.S. paediatric multidisciplinary Disorders Sex Development-Intersex clinics, we examine the process gender assignment children with "atypical" genitalia. Rather than fully determined by presence biological sex traits, discussion hinges how clinician and parent collaboratively imagine different aspects what constitutes being a gendered person. They orient towards potential for sexual intimacy, fertility, dysphoria, stigma, gonadal cancer...

Clinical decision-making for individuals with 46,XY disorders/differences of sex development (DSD) remains unsettled and controversial. The North American DSD Clinician Survey examines the recommendations a large group clinical specialists over last two decades. Active members (Lawson Wilkins) Pediatric Endocrine Society Societies Urology were invited to respond web-based survey at three different timepoints: 2003-2004 (T1), 2010-2011 (T2), 2019-2020 (T3). Data from 429 participants in T1,...

Between 1958 and today, advances in research the clinical management of short stature with GH have occurred. Initially, limited supply pituitary-derived hGH led to strict criteria for diagnosing deficiency tightly controlled treatment protocols. With advent biosynthetic GH, has increased, number indications grown, focus intervention changed from hormone replacement stature. Improved psychosocial adaptation is an underlying, albeit largely unspoken inadequately researched, target treatment....

Disorders of sex development (DSD) represent a collection rare diseases that generate substantial controversy regarding best practices for diagnosis and treatment. A significant barrier preventing better understanding how patients with these conditions should be evaluated treated, especially from psychological standpoint, is the lack systematic standardized approaches to identify cases study inclusion. Common include “hand-picked” subjects already known practice, which could introduce bias....

Over the last decade, increasing attention has been focused on health of children with disorders sex development (DSD) and gaps in our knowledge how early care may be linked to long-term outcome. In current environment greater collaboration as part clinical research networks, stronger links have forged between professionals, patients parents guidelines developed for directing care. With continuing technological advances it is likely that ability reach a firm diagnosis will improve but this...