Adolescents with Disorders of Sex Development (DSD)--Lost in Transition?

Area of Science:

• Pediatric Endocrinology
• Adolescent Medicine
• Genetics and Developmental Biology

Background:

• Children with chronic illnesses experience difficulties transitioning to adulthood, including independence and healthcare access.
• These challenges are significantly amplified for children with disorders of sex development (DSD).
• Disorders of sex development involve atypical pubertal progression, with diagnosis timing varying from childhood to adolescence.

Purpose of the Study:

• To discuss the unique challenges faced by children with DSD and their families during adolescence.
• To provide an overview of the critical transition process from pediatric to adult care for individuals with DSD.
• To illustrate specific aspects of these challenges using examples of particular DSD conditions.

Main Methods:

• Literature review and synthesis of existing research on chronic illness transition.
• Analysis of challenges specific to disorders of sex development during adolescence.
• Case study approach using select DSD conditions to exemplify transition issues.

Main Results:

• Adolescence presents unique hurdles for individuals with DSD concerning physical development, identity, and psychosocial adjustment.
• The transition process requires careful planning, multidisciplinary care coordination, and patient/family education.
• Specific DSD conditions highlight varied needs regarding hormonal management, surgical interventions, and long-term follow-up.

Conclusions:

• Effective transition strategies are crucial for optimizing health outcomes and quality of life for adolescents with DSD.
• Early identification and proactive management of transition needs can mitigate long-term challenges.
• Continued research and improved healthcare models are necessary to support this vulnerable population.