| I A Hughes, C Houk, S F Ahmed, P A Lee, LWYPES1/ESPE2 Consensus Group
The consensus statement on the management of intersex disorders, authored by a multidisciplinary team from the Lawson Wilkins Pediatric Endocrine Society (LWPEs) and the European Society for Paediatric Endocrinology (ESPE), provides a comprehensive overview of the long-term management strategy for intersex children. The statement emphasizes the need for a multidisciplinary approach involving professionals from various fields, including endocrinology, surgery, psychology, and genetics. Key points include:
1. **Nomenclature and Definitions**: The term "disorders of sex development" (DSD) is proposed to replace terms like intersex, pseudohermaphroditism, and hermaphroditism to avoid potential pejorative connotations and to better reflect the complexity of these conditions.
2. **Investigation and Management**:
- **General Concepts of Care**: Early gender assignment should be avoided until expert evaluation is completed. Multidisciplinary teams should be involved in the initial contact with families, providing education and support.
- **Clinical Evaluation**: Initial testing includes karyotyping, imaging, hormone measurements, and other specific tests to identify the underlying cause of DSD.
- **Gender Assignment**: Decisions about gender assignment should consider the diagnosis, genital appearance, surgical options, and family preferences. Early gender assignment is generally recommended for conditions like congenital adrenal hyperplasia (CAH) and complete androgen insensitivity syndrome (CAIS).
- **Surgical Management**: Surgeries should be performed by experts and tailored to the individual needs, focusing on functional outcomes rather than cosmetic appearance. Early separation of the vagina and urethra is recommended to avoid complications.
- **Sex Steroid Replacement**: Hormonal therapy should aim to replicate normal pubertal development, including the induction of secondary sexual characteristics and bone mineral accumulation.
3. **Psychosocial Management**: Mental health staff should provide ongoing support to promote positive adaptation. Gender identity development begins before age 3, and psychological evaluations should be conducted to support families and patients.
4. **Outcomes**: Long-term outcomes should include physical health, sexual function, social and psychosexual adjustment, mental health, quality of life, and social participation. Future studies should focus on long-term outcomes, surgical techniques, and the effectiveness of different management approaches.
5. **Future Studies**: There is a need for more research to improve understanding of gender identity, surgical outcomes, and the long-term impact of DSD on individuals and families.
The statement highlights the importance of a holistic and patient-centered approach to managing intersex disorders, emphasizing the need for ongoing research and collaboration among healthcare professionals.The consensus statement on the management of intersex disorders, authored by a multidisciplinary team from the Lawson Wilkins Pediatric Endocrine Society (LWPEs) and the European Society for Paediatric Endocrinology (ESPE), provides a comprehensive overview of the long-term management strategy for intersex children. The statement emphasizes the need for a multidisciplinary approach involving professionals from various fields, including endocrinology, surgery, psychology, and genetics. Key points include:
1. **Nomenclature and Definitions**: The term "disorders of sex development" (DSD) is proposed to replace terms like intersex, pseudohermaphroditism, and hermaphroditism to avoid potential pejorative connotations and to better reflect the complexity of these conditions.
2. **Investigation and Management**:
- **General Concepts of Care**: Early gender assignment should be avoided until expert evaluation is completed. Multidisciplinary teams should be involved in the initial contact with families, providing education and support.
- **Clinical Evaluation**: Initial testing includes karyotyping, imaging, hormone measurements, and other specific tests to identify the underlying cause of DSD.
- **Gender Assignment**: Decisions about gender assignment should consider the diagnosis, genital appearance, surgical options, and family preferences. Early gender assignment is generally recommended for conditions like congenital adrenal hyperplasia (CAH) and complete androgen insensitivity syndrome (CAIS).
- **Surgical Management**: Surgeries should be performed by experts and tailored to the individual needs, focusing on functional outcomes rather than cosmetic appearance. Early separation of the vagina and urethra is recommended to avoid complications.
- **Sex Steroid Replacement**: Hormonal therapy should aim to replicate normal pubertal development, including the induction of secondary sexual characteristics and bone mineral accumulation.
3. **Psychosocial Management**: Mental health staff should provide ongoing support to promote positive adaptation. Gender identity development begins before age 3, and psychological evaluations should be conducted to support families and patients.
4. **Outcomes**: Long-term outcomes should include physical health, sexual function, social and psychosexual adjustment, mental health, quality of life, and social participation. Future studies should focus on long-term outcomes, surgical techniques, and the effectiveness of different management approaches.
5. **Future Studies**: There is a need for more research to improve understanding of gender identity, surgical outcomes, and the long-term impact of DSD on individuals and families.
The statement highlights the importance of a holistic and patient-centered approach to managing intersex disorders, emphasizing the need for ongoing research and collaboration among healthcare professionals.