Telemedicine in Spina Bifida Transition: A Pilot Study

After enrollment, patients will be randomly assigned to either the control or intervention
group. Randomization will be performed using computer software with 1:1 group allocation. We
anticipate 26 participants in each group.

The control group will receive the current standard of care transition program which includes
goal-setting at their annual Multidisciplinary Spina Bifida Clinic visit. Additionally, they
will receive encouragement e-mail and text messages. These messages will be sent at 2 weeks,
3 months, 6 months, and 9 months from last in-person appointment.

The intervention group will participate in face-to-face video telemedicine visits, in
addition to routine yearly visits to the Spina Bifida Clinic. These 30-minute visits will
occur at 2 weeks, 3 months, 6 months and 9 months from last in-person clinic appointment. The
visits will consist of structured counseling using a plan-do-study-act cycle approach to
incrementally adopt elements of a well-planned transition. Using qualitative notes from each
session, I hypothesize that I will be able to identify common themes or challenges across
patients and develop adjunctive education, support, and monitoring tools for patients and
families in transition. I will collaborate with experts from orthopedic surgery, physical
medicine and rehabilitation, urology, neurosurgery, nutrition, and psychology to develop
content for educational tools.

Inclusion Criteria:

- Patients >= 13 years with a diagnosis of spina bifida who are currently seen through
the Children's of Alabama Multidisciplinary Spina Bifida Clinic

Exclusion Criteria:

- Patients without access to the internet.