Multidisciplinary Management of Tethered Spinal Cord Syndrome in Children: Operationalizing an Outpatient Patient-Centered Workflow

Mandana Behbahani,1,2 Nathan Shlobin,1,2 Colleen Rosen,1 Elizabeth Yerkes,3,4 Vineeta Swaroop,5,6 Sandi Lam,1,2 Robin Bowman1,2 1Division of Pediatric Neurosurgery, Ann and Robert H Lurie Children’s Hospital of Chicago, Chicago, IL, USA; 2Department of Neurosurgery, Northwestern University Feinberg School of Medicine, Chicago, IL, USA; 3Division of Pediatric Urology, Ann and Robert H Lurie Children’s Hospital of Chicago, Chicago, IL, USA; 4Department of Urology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA; 5Division of Pediatric Orthopedic Surgery, Ann and Robert H Lurie Children’s Hospital of Chicago, Chicago, IL, USA; 6Department of Orthopedic Surgery, Northwestern University Feinberg School of Medicine, Chicago, IL, USACorrespondence: Robin BowmanDivision of Pediatric Neurosurgery, Director of Spina Bifida Program, Lurie Children’s Hospital, 225 E. Chicago Ave., Chicago, IL 60611, USATel +1 312 227 4220Fax +1 312 227 9679Email rbowman@luriechildrens.orgIntroduction: Multidisciplinary care for patients with tethered spinal cord syndrome (TCS) is valuable in ensuring comprehensive evaluation, timely follow-up, optimal functional outcome, and patient-centered care. The family-centered focus aims to minimize patient and parental burdens associated with care coordination. We present our first-year institutional experience in operationalizing a multidisciplinary, patient-centered, pediatric tethered cord clinic (TCC) to manage routine, long-term surgical follow-up for children with non-myelomeningocele-related tethered spinal cords.Methods: TCC is composed of three surgical services: orthopedic surgery, neurosurgery, urology. A retrospective chart review of patients seen in the TCC from January 2019 to January 2020 was conducted. Patients enrolled in the clinic were intended for long-term follow-up. Demographic and outcome variables were collected.Results: Fifty-nine patients were seen in TCC. Types of tethered spinal cords amongst these patients were the following: fatty filum (62.7%), dermal sinus tract (15.2%), meningocele manqué (8.4%), lipomyelomeningocele (6.7%), low lying conus medullaris (5.1%), and sacral arachnoid cyst (1.7%). Age at diagnosis was 1.31 ± 2.21 (median: 0.25 years) and at follow-up was 9.0 ± 5.18 years (median: 8 years). A total of 50.9% of patients were female, and 93.2% had a prior untethering procedure. Of all patients, 6.8% have no surgical intervention and continue to be monitored conservatively for evidence of decline. All three services evaluated 84.8% of patients during the same clinic session, while 15.3% of patients were seen by two of the services, and 20.3% of patients were able to schedule related imaging or diagnostic testing during the same visit.Conclusion: We describe successful implementation of a multidisciplinary pediatric TCC and document the first year of experience. The TCC streamlines care, decreases burden on families, and reduces those lost to follow-up. Complex disease pathologies, even when clinically stable, require long-term follow-up with multiple subspecialties and benefit from multidisciplinary clinics.Keywords: neural tube defect, tethered cord, pediatric spine, neurogenic bladder, multidisciplinary care, ambulatory efficiency