Transition to Adult Care in Spina Bifida
A 17-year-old girl with L4 myelomeningocele is seen for a transition visit. She has a ventriculoperitoneal shunt, neurogenic bladder managed with clean intermittent catheterization, a latex allergy, and uses a manual wheelchair. She is a high school senior who wants to attend community college 2 hours from home. Her parents have managed all appointments and supplies. She has had two unplanned hospitalizations for shunt malfunction and one pressure injury in the past year. The adult spina bifida clinic has a 6-month wait. The team must decide what to prioritize before graduation.
1. How would you assess transition readiness and decision-making capacity, and what legal steps should be considered?
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Use a structured readiness assessment covering health literacy, medication and supply management, appointment scheduling, emergency recognition, and self-advocacy. Ask her to demonstrate catheter care and describe shunt malfunction signs. Determine whether she can make health care decisions; if not, discuss supported decision-making, health care proxy, or guardianship before age 18, according to local law. Involve her directly in goal setting. A 6-month adult clinic wait means the transfer plan must start now, with a written summary, named adult providers, and a warm handoff rather than a last-minute referral.
2. What medical self-management and emergency planning should be completed before she leaves home?
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Prioritize shunt emergency signs, latex avoidance, skin checks, and urinary tract infection symptoms. Teach her to perform clean intermittent catheterization independently, manage supplies, and refill prescriptions. Create a written emergency plan listing her shunt history, latex allergy, baseline blood pressure, and contact numbers. Coordinate with neurosurgery and urology for adult providers. Use teach-back and a trial of independent scheduling. Address the recent pressure injury with seating, skin checks, and a plan for college dormitory accessibility.
3. What equipment, insurance, school, and vocational issues should be addressed?
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Confirm wheelchair maintenance, a backup plan, and accessible housing and transportation at college. Review insurance coverage for catheters, wheelchair repair, and adult providers, and identify a pharmacy near campus. Connect her with disability services for accommodations and with vocational rehabilitation for career planning. The parents should shift from managing to coaching. Prioritize the most time-sensitive items: legal decision-making, adult provider handoff, emergency plan, and supply access. Schedule a follow-up transition visit to confirm these tasks are completed.