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

Figures & data

Figure 1 Decision tree for scheduling into the tethered cord clinic.

Table 1 Demographics

Age	Age at study time	9.0 years (SD=5.2)
	Age at diagnosis	Mean 1.3 years (SD=2.2) Median 0.3 years
	Age at surgery	Mean 2.3 years (SD=3.3) Median 0.8 years
Gender	Male	29 (49.15%)
	Female	30 (50.85%)
Race	White	33 (55.9%)
	Hispanic	18 (30.5%)
	Asian	4 (6.8%)
	Black	1 (1.7%)
	Other	3 (5.1%)
Referral Pattern	Pediatrician	39 (66.1%)
	Urologist	5 (8.5%)
	Dermatologist	3 (5.1%)
	Orthopedic Surgeon	2 (3.4%)
	Neurosurgeon	2 (3.4%)
	Pediatric surgeon	2 (3.4%)
	Gastroenterologist	2 (3.4%)
	Cardiologist	2 (3.4%)
	Genetics	1 (1.7%)
Insurance status	Private Insurance	47 (79.7%)
	Public Insurance	12 (20.3%)

Table 2 Patient Characteristics and Clinical History

Tethered cord etiology	Fatty Filum	37 (62.7%)
	Dermal Sinus Tract	9 (15.2%)
	Meningocele Manqué	5 (8.5%)
	Lipomyelomeningocele	4 (6.8%)
	Low Lying Conus Medullaris	3 (5.1%)
	Sacral Arachnoid Cyst	1 (1.7%)
Skin Stigmata	Sacral dimple	27 (45.7%)
	Flammeus Nevus	7 (11.9%)
	Abnormal hairy patch	3 (5.1%)
	Gluteal cleft asymmetry	2 (3.4%)
	Swelling of lumbosacral region	2 (3.4%)
	No stigmata	14 (23.7%)
	Unknown	4 (6.8%)
Surgical management	Neurosurgical procedure	54 (91.5%)
	Urologic procedure	4 (6.8%)
	Orthopedic Procedure	1 (1.7%)
Outcome	Independently Ambulatory	59 (100%)
	Orthotic: Shoe insoles	5 (8.5%)
	Orthotic: Other	3 (5.1%)
Syndromic association	Yes	5 (8.5%)
	No	54 (91.5%)
Redo Surgery	Yes	2 (3.4%)
	No	57 (96.6%)

Table 3 Multidisciplinary Care Patterns

Evaluated by all 3 subspecialties	50 (84.8%)
Evaluated by all 2 subspecialties	9 (15.2%)
Ancillary testing (Imaging, urologic testing) or Physical therapy on the day of appointment	12 (20.3%)
Comprehensive Follow-up	59 (100%)

Figure 2 Map showing geographical origin of patients for tethered cord clinic.