Growing Pains with Spina Bifida: Assisting with Transition from Pediatric to Adult Providers-Session Recording

Video Transcription

Video Summary

The session focused on addressing the transition from pediatric to adult care for individuals with Spina Bifida, highlighting the challenges and strategies for effective management across various aspects of their lives. The transition from pediatric to adult medical care needs careful, purposeful planning to ensure continuity and address specific challenges such as skin and mobility issues, mental health, sexual health, and employment barriers. Having over 170,000 Americans, mostly adults, living with Spina Bifida underscores the importance of maintaining care continuity to prevent secondary complications like skin infections and hospital readmissions that affect younger adults disproportionately.<br /><br />Key components of a successful transition include promoting emotional and practical skills for self-management, advocating for patients to become self-advocates, monitoring mobility changes, managing chronic skin issues, and ensuring comprehensive skin checks are part of routine care. Mental health support is crucial, considering the higher prevalence of anxiety and depression in this population. Discussions around sexual health, family planning, and employment opportunities must be normalized and integrated into the care plan to address misconceptions and improve quality of life.<br /><br />Practical solutions to independence, such as adaptive parenting tools and adaptive employment options, as well as comprehensive management plans for neurogenic bowel and bladder issues, were recommended. These include using irrigation systems, medicine adjustments, the MACE procedure, and maintaining a consistent management routine. Ultimately, the emphasis is on a multidisciplinary approach, individualized care, and steady support through various life transitions.

Keywords

Spina Bifida

pediatric to adult care

transition challenges

self-management

mental health

sexual health

employment barriers

skin issues

adaptive tools

neurogenic bowel

multidisciplinary approach