Transition Readiness and Care Needs Among Youth With Neuroimmune Disorders: A Descriptive Survey Study

Area of Science:

• Neuroimmunology
• Pediatric to Adult Healthcare Transition
• Patient-Centered Care

Background:

• Transition of care (TOC) presents unique challenges across medical subspecialties.
• Understanding patient and caregiver readiness is crucial for effective TOC programs.
• Limited data exist on TOC readiness in neuroimmune disorder populations.

Purpose of the Study:

• To assess TOC readiness, challenges, and support needs in youth with neuroimmune disorders and their caregivers.
• To identify factors that facilitate a successful transition to adult healthcare.

Main Methods:

• Cross-sectional survey administered to patients with neuroimmune disorders and their caregivers.
• Assessed awareness, readiness, challenges, and support preferences for TOC.
• Included diverse neuroimmune conditions like MOGAD, MS, and anti-NMDA receptor encephalitis.

Main Results:

• 83% of caregivers and 32% of patients felt the child was not ready for transition.
• Primary concerns included adult providers' unfamiliarity with patient history (53-65%).
• Key patient-perceived gaps: clinic information (81%), emergency plans (77%), insurance (81%). Facilitators: educational curriculum (35%), dedicated transition appointment (35%).

Conclusions:

• Significant TOC readiness gaps exist in the neuroimmune disorder population.
• Structured education, provider continuity, and support programming are vital facilitators.
• These elements can reduce care disruption and enhance confidence in adult healthcare navigation.