Consensus statement on management of intersex disorders

Area of Science:

• Pediatric Endocrinology
• Genetics
• Child Psychology

Background:

• Intersex variations require multidisciplinary, long-term management involving families and various specialists.
• Significant advancements have been made in diagnosis, surgical interventions, and understanding psychosocial challenges.
• Patient advocacy is increasingly recognized and integrated into care strategies.

Purpose of the Study:

• To comprehensively review the management of intersex disorders from a broad perspective.
• To evaluate available data on longer-term outcomes for individuals with intersex variations.
• To formulate recommendations and proposals for future research in the field.

Main Methods:

• Convened working groups comprising 50 international experts in pediatric endocrinology and related fields.
• Conducted an evidence-based literature review to inform a defined set of questions for the working groups.
• Facilitated a consensus-building meeting to agree on a framework for the final document.

Main Results:

• The paper presents a consensus document developed through a rigorous review and expert deliberation process.
• It addresses current best practices and identifies gaps in knowledge regarding intersex disorder management.
• The findings highlight the importance of a holistic approach encompassing medical, psychological, and social aspects.

Conclusions:

• The established framework provides a foundation for standardized and improved management of intersex disorders.
• Further research is crucial to enhance long-term outcomes and patient well-being.
• Collaboration between professional societies like LWPES and ESPE is vital for advancing the field.