Socioeconomic and demographic factors in the diagnosis and treatment of Chiari malformation type I and syringomyelia
Authors: Akbari Syed Hassan A. , Rizvi Asad A. , CreveCoeur Travis S. , Han Rowland H. , Greenberg Jacob K. , Torner James , Brockmeyer Douglas L. , Wellons John C. , Leonard Jeffrey R. , Mangano Francesco T. , Johnston James M. , Shah Manish N. , Iskandar Bermans J. , Ahmed Raheel , Tuite Gerald F. , Kaufman Bruce A. , Daniels David J. , Jackson Eric M. , Grant Gerald A. , Powers Alexander K. , Couture Daniel E. , Adelson P. David , Alden Tord D. , Aldana Philipp R. , Anderson Richard C. E. , Selden Nathan R. , Bierbrauer Karin , Boydston William , Chern Joshua J. , Whitehead William E. , Dauser Robert C. , Ellenbogen Richard G. , Ojemann Jeffrey G. , Fuchs Herbert E. , Guillaume Daniel J. , Hankinson Todd C. , O’Neill Brent R. , Iantosca Mark , Oakes W. Jerry , Keating Robert F. , Klimo Paul , Muhlbauer Michael S. , McComb J. Gordon , Menezes Arnold H. , Khan Nickalus R. , Niazi Toba N. , Ragheb John , Shannon Chevis N. , Smith Jodi L. , Ackerman Laurie L. , Jea Andrew H. , Maher Cormac O. , Narayan Prithvi , Albert Gregory W. , Stone Scellig S. D. , Baird Lissa C. , Gross Naina L. , Durham Susan R. , Greene Stephanie , McKinstry Robert C. , Shimony Joshua S. , Strahle Jennifer M. , Smyth Matthew D. , Dacey Ralph G. , Park Tae Sung , Limbrick David D. 
Published: December 2021

OBJECTIVE

The goal of this study was to assess the social determinants that influence access and outcomes for pediatric neurosurgical care for patients with Chiari malformation type I (CM-I) and syringomyelia (SM).

METHODS

The authors used retro- and prospective components of the Park-Reeves Syringomyelia Research Consortium database to identify pediatric patients with CM-I and SM who received surgical treatment and had at least 1 year of follow-up data. Race, ethnicity, and insurance status were used as comparators for preoperative, treatment, and postoperative characteristics and outcomes.

RESULTS

A total of 637 patients met inclusion criteria, and race or ethnicity data were available for 603 (94.7%) patients. A total of 463 (76.8%) were non-Hispanic White (NHW) and 140 (23.2%) were non-White. The non-White patients were older at diagnosis (p = 0.002) and were more likely to have an individualized education plan (p < 0.01). More non-White than NHW patients presented with cerebellar and cranial nerve deficits (i.e., gait ataxia [p = 0.028], nystagmus [p = 0.002], dysconjugate gaze [p = 0.03], hearing loss [p = 0.003], gait instability [p = 0.003], tremor [p = 0.021], or dysmetria [p < 0.001]). Non-White patients had higher rates of skull malformation (p = 0.004), platybasia (p = 0.002), and basilar invagination (p = 0.036). Non-White patients were more likely to be treated at low-volume centers than at high-volume centers (38.7% vs 15.2%; p < 0.01). Non-White patients were older at the time of surgery (p = 0.001) and had longer operative times (p < 0.001), higher estimated blood loss (p < 0.001), and a longer hospital stay (p = 0.04). There were no major group differences in terms of treatments performed or complications. The majority of subjects used private insurance (440, 71.5%), whereas 175 (28.5%) were using Medicaid or self-pay. Private insurance was used in 42.2% of non-White patients compared to 79.8% of NHW patients (p < 0.01). There were no major differences in presentation, treatment, or outcome between insurance groups. In multivariate modeling, non-White patients were more likely to present at an older age after controlling for sex and insurance status (p < 0.01). Non-White and male patients had a longer duration of symptoms before reaching diagnosis (p = 0.033 and 0.004, respectively).

CONCLUSIONS

Socioeconomic and demographic factors appear to influence the presentation and management of patients with CM-I and SM. Race is associated with age and timing of diagnosis as well as operating room time, estimated blood loss, and length of hospital stay. This exploration of socioeconomic and demographic barriers to care will be useful in understanding how to improve access to pediatric neurosurgical care for patients with CM-I and SM.