111. Scope Of Care In The First Four Years Of Life For Individuals Born With Myelomeningocele: A Single Institution Experience

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Authors: Kathrin Zimmerman; Isaac Shamblin; Brandon Rocque, MD, MS; Betsy Hopson; Jeffrey Blount, MD (Birmingham, AL)

Introduction: The one-year survival rate of patients born with myelomeningocele now exceeds 92%.  These patients are known to be high consumers of healthcare resources, with many early hospital encounters. This study objective is to describe the volume and extent of medical and surgical care that patients with myelomeningocele receive during the first four years of life including the estimated time involved in accessing care.

Methods: Clinical/demographic data were collected from the Children’s of Alabama Spina Bifida Web Tracker, part of the National Spina Bifida Patient Registry. Data relating to all hospital admissions, surgical procedures, and clinic visits were collected from the medical record.

Results: 114 subjects with a primary diagnosis of myelomeningocele were included. 55% were male, 72% Caucasian, 11% Hispanic. 28% had a mid-lumbar functional lesion level.

Over the first four years of life, 916 total surgical procedures were performed: 503 in year 1, 152 in year 2, 130 in year 3, and 131 in year 4. Of total procedures, orthopedics comprised 9%, ENT 5%, general/GI 5%, urology 4%. Neurosurgical procedures accounted for 47% of total procedures and the plurality of procedures each year, 55%, 17%, 14%, and 14%, respectively.

During the study period, a total of 435 neurosurgical procedures were performed. 76% occurred in the first year of life, 10% in the second, 6% in the third, and 8% in the fourth.

Mean number of hospital visits was 25.65, ER visits 1.88, surgical procedures 8.04. Average commute from residence to hospital was 1.35 hours, with total average drive time over 4 years being 66.03 hours.

Conclusion: Children with myelomeningocele have multiple hospitalizations, surgeries, and medical encounters in the first 4 years of life. Neurosurgical procedures are the most common. These data will be valuable when counseling new parents and prospective parents of children with this condition.

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