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Multidisciplinary Management of Tethered Spinal Cord Syndrome in Children: Operationalizing an Outpatient
Mandana Behbahani1,2, Nathan Shlobin1,2, Colleen Rosen1
1Division of Pediatric Neurosurgery, Ann and Robert H Lurie Children's Hospital of Chicago, Chicago, IL, USA.
Insights
A multidisciplinary pediatric tethered cord clinic (TCC) streamlines care for children with tethered spinal cord syndrome (TCS). This patient-centered approach reduces family burden and improves long-term follow-up for complex cases.
Area of Science:
- Pediatric Surgery
- Neurology
- Orthopedics
Background:
- Multidisciplinary care is crucial for comprehensive management of tethered spinal cord syndrome (TCS).
- A family-centered approach minimizes burdens in coordinating care for pediatric patients.
- Operationalizing a dedicated pediatric tethered cord clinic (TCC) for long-term follow-up of non-myelomeningocele TCS is presented.
Purpose of the Study:
- To describe the first-year experience of implementing a multidisciplinary, patient-centered pediatric tethered cord clinic (TCC).
- To evaluate the effectiveness of the TCC in managing routine, long-term surgical follow-up for pediatric TCS.
- To assess the impact of the TCC on care coordination and patient outcomes.
Main Methods:
- Retrospective chart review of patients seen in the TCC from January 2019 to January 2020.
- The TCC integrated orthopedic surgery, neurosurgery, and urology services.
- Demographic and outcome variables were collected for patients requiring long-term follow-up.
Main Results:
- Fifty-nine patients were evaluated, with fatty filum being the most common diagnosis (62.7%).
- The majority of patients (93.2%) had prior untethering surgery.
- Integrated care was achieved, with 84.8% of patients seen by all three services in a single session, and 20.3% scheduled for related diagnostics during the same visit.
Conclusions:
- Successful implementation of a multidisciplinary pediatric TCC was demonstrated.
- The TCC effectively streamlines care, reduces family burden, and minimizes patient loss to follow-up.
- Multidisciplinary clinics are beneficial for managing complex pediatric TCS requiring long-term subspecialty care.
Introduction:
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.
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