Transition into adulthood: tuberous sclerosis complex, Sturge-Weber syndrome, and Rasmussen encephalitis

Area of Science:

• Neurology
• Pediatric Neurology
• Neurodevelopmental Disorders

Background:

• Tuberous sclerosis complex (TSC), Sturge-Weber syndrome (SWS), and Rasmussen encephalitis (RE) are rare neurological disorders affecting children.
• These conditions present diverse neurological and developmental challenges, necessitating specialized care transitions.
• Understanding the evolving needs of patients with these conditions is crucial for effective lifelong management.

Purpose of the Study:

• To delineate the distinct transition/transfer needs of pediatric patients with TSC, SWS, and RE to adult care.
• To highlight the shifting focus of medical management for each condition during the transition process.
• To inform healthcare providers on optimizing care pathways for these complex patient groups.

Main Methods:

• Comparative analysis of clinical progression and management shifts in TSC, SWS, and RE.
• Review of literature focusing on transition of care protocols for rare pediatric neurological disorders.
• Synthesis of expert opinion on long-term care considerations for affected individuals.

Main Results:

• TSC management shifts from developmental/seizure focus to renal, psychiatric, and other adult-onset issues.
• SWS care transitions emphasize disability management and migraine control over initial seizure/rehabilitation concerns.
• RE transition complexity varies with onset; childhood-onset, post-surgery cases may have static, manageable conditions.

Conclusions:

• Each neurological condition (TSC, SWS, RE) requires a distinct, condition-specific approach to adult care transition.
• Proactive planning and multidisciplinary care are essential for successful transitions in these pediatric neurological disorders.
• Individualized care plans accounting for varying intellectual capacities and evolving medical needs are paramount.