Editorial. A terrible border wall: a study of pediatric moyamoya exposes socioeconomic barriers to care in the United States

Edward R. Smith Department of Neurosurgery, Boston Children’s Hospital and Harvard Medical School, Boston, Massachusetts

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There is a growing awareness of the widespread pernicious effects of racism and economic inequality in American society. One of the most important areas impacted by this inequality is healthcare. In the current study by Raygor et al., the group used the Kids’ Inpatient Database (KID) to examine the delivery of care for children with moyamoya.1 This work is important both for highlighting a problem (disparities associated with socioeconomic status) and presenting data that suggests a possible solution (establishing centers of excellence that can break down these barriers).

Given the importance of surgical revascularization to moyamoya outcomes, Raygor et al. used the KID database to examine practice patterns for this procedure in the United States. They reviewed the available data from 2003 to 2016 for children 18 years of age and younger and found a total of 1449 hospitalizations for moyamoya in this group. In terms of general demographics, there were no surprises; their report mirrored previous studies of North American pediatric moyamoya populations (and had consistent differences from Asian nations).25 Overall, there was a female preponderance (55% vs 45%), and the admissions were 48% Caucasian, 20% African American, 12.5 % Hispanic, and 11% Asian or Pacific Islander. Financially, the majority (52%) of patients had private insurance, while 38% had Medicaid, with the remainder being self-pay. The vast majority of admissions (72%) were elective, with only 2% reporting hemorrhage as part of the admission diagnosis.

The interesting findings relate to the distribution of which groups of patients underwent revascularization during their hospitalization and how this related to outcomes, insurance status and the moyamoya volume at the center where the patient was admitted. Only 32% of hospitalizations for Hispanic patients and only 40% for African American patients resulted in surgical revascularization a marked contrast to 49% for Caucasian patients and 54% for Asian/Pacific Islander patients. In addition, Hispanic patients had longer lengths of stay (2 additional days) and higher costs per hospitalization, despite lower surgery rates.

These ethnic disparities in care closely parallel economic stratification. The data reveal clear trends, with decreasing income tracking with decreasing rates of surgery being performed. High-income patients underwent revascularization in 50% of hospitalizations, while low-income patients only underwent surgery in 35% of admissions. Using insurance as a surrogate for income, the same pattern exists: rates of revascularization were 66% for self-pay, 49% for private insurance, and only 33% for Medicaid.

These findings are depressing, but there is a silver lining to be found when looking more closely at the data. Raygor and colleagues further examined the outcomes of patients based on hospital size and moyamoya volume. Importantly, hospital size had no significant impact on any of the metrics examined, but the moyamoya volume of a center had a huge positive effect. In particular, the disparity on performing revascularization completely reversed. For Hispanic patients, revascularization rates were 16% at low-volume, 17% at medium-volume, and 61.5% at high-volume moyamoya centers. Equally important, once patients had surgery, there were no significant differences in complication rates across all the economic quartiles (5%, 6%, 5%, and 6%) or by any insurance type (5.7%, 5.4%, and 5.6%).

These data are important because they demonstrate that the single biggest factor that impacts care is whether a patient can get access to a high-volume moyamoya center. If so, then they can get an equal chance of receiving revascularization, with similar outcomes to anyone else, regardless of ethnicity, insurance, or economic status. This suggests that there is a way to democratize and improve the treatment of moyamoya for everyone: by directing moyamoya patients to high-volume centers of excellence.

Unfortunately, there are two significant barriers impeding progress toward this goal. The first is geographic. Some of the densest Hispanic and African American populations—the groups at risk for unequal care—are concentrated in areas bereft of high-volume moyamoya centers.2 Second, there are substantial administrative walls put up by Medicare, private insurers, and local hospitals to impede the movement of patients to centers outside of established networks.

Fortunately, there are reasons to hope that change may be possible. First, there is an encouraging national focus on addressing racial and social inequalities. Awareness of this problem, as raised by Raygor et al. in their article, may provide an avenue to spotlight media attention on this (and related) issues in medicine. Second, there is actually a vested self-interest for insurers and local healthcare networks to refer moyamoya patients to centers of excellence. In addition to the moral impetus to provide the best care (revascularization such as pial synangiosis can reduce stroke risk by 10-fold, with excellent quality of life for decades), these operations are recommended in the current American Stroke Association guidelines, and recent work has demonstrated that high-volume centers deliver far better clinical results (8-fold lower complication rates, 16-fold lower mortality) while also making care faster and cheaper (length of stay is 32% shorter and charges are 57% less).2,68 In short, getting patients to high-volume moyamoya centers, even if they have to travel across the country, will ultimately save insurers substantial amounts of money (averaging $88,000 of savings per case) while also providing better quality of care with (presumably!) happier patients.2

While moyamoya is a rare disease, it has an outsized impact on the costs of medical care and the lives of affected patients. Raygor and colleagues have performed a valuable service by exposing areas of inequality related to moyamoya disease. Importantly, it appears that a solution exists: promoting the development of high-volume centers of excellence accessible to everyone. This approach offers better care and lower costs—a win for insurers, providers, and patients. Hopefully this work will have an outsized impact in breaking down walls that prevent all Americans—regardless of race or economic status—from getting the best quality care available.

Disclosures

The author reports no conflict of interest.

References

  • 1

    Raygor KP, Phelps RRL, Rutledge C, et al. Socioeconomic factors associated with pediatric moyamoya disease hospitalizations: a nationwide cross-sectional study. J Neurosurg Pediatr. Published March 25, 2022. doi: 10.3171/2022.1.PEDS21339

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  • 2

    Titsworth WL, Scott RM, Smith ER. National analysis of 2454 pediatric moyamoya admissions and the effect of hospital volume on outcomes. Stroke. 2016;47(5):13031311.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 3

    Smith ER, Scott RM. Moyamoya: epidemiology, presentation, and diagnosis. Neurosurg Clin N Am. 2010;21(3):543551.

  • 4

    Acker G, Goerdes S, Schneider UC, Schmiedek P, Czabanka M, Vajkoczy P. Distinct clinical and radiographic characteristics of moyamoya disease amongst European Caucasians. Eur J Neurol. 2015;22(6):10121017.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 5

    Ghaffari-Rafi A, Ghaffari-Rafi S, Leon-Rojas J. Socioeconomic and demographic disparities of moyamoya disease in the United States. Clin Neurol Neurosurg. 2020;192:105719.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 6

    Riordan CP, Storey A, Cote DJ, Smith ER, Scott RM. Results of more than 20 years of follow-up in pediatric patients with moyamoya disease undergoing pial synangiosis. J Neurosurg Pediatr. 2019;23(5):586592.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 7

    Ferriero DM, Fullerton HJ, Bernard TJ, et al. Management of stroke in neonates and children: a scientific statement from the American Heart Association/American Stroke Association. Stroke. 2019;50(3):e51e96.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 8

    Scott RM, Smith ER. Moyamoya disease and moyamoya syndrome. N Engl J Med. 2009;360(12):12261237.

Kunal P. Raygor Department of Neurological Surgery, University of California, San Francisco, California

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Adib A. Abla Department of Neurological Surgery, University of California, San Francisco, California

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Response

We would like to thank not only Dr. Smith for the thoughtful editorial on our study, but also the journal editors for inviting our response.

As mentioned by Dr. Smith, the goal of our study was not only to underscore the socioeconomic disparities associated with moyamoya disease hospitalizations in children but also to suggest a possible solution. Our analysis of the Kids’ Inpatient Database demonstrated that moyamoya hospitalizations for Hispanic patients were associated with decreased odds of revascularization compared with hospitalizations for White patients; however, we were unable to infer the precise reason for this discrepancy with this data set. To be sure, the etiology is likely systemic and multifactorial, involving issues including access to insurance, specialty care referrals, and health literacy, in addition to cultural factors.1,2 Even so, rates of revascularization among Hispanics were higher at high-volume centers compared with low- and medium-volume centers, suggesting that directing moyamoya care to centers of excellence may help counter systemic issues contributing to the discrepancy. We wholly agree with Dr. Smith and previously published reports that consolidation of specialty care at high-volume centers of excellence will help provide the best quality of care to the greatest number of patients.35

Our study is certainly not the first to highlight the association between demographic factors like race and quality of hospital care. Although it is a depressing realization, it should come as no surprise that socioeconomic factors are associated with disparities in the quality of care for neurosurgical disorders in the same way that they are associated with delivery of care for nonneurosurgical conditions. Neurosurgical disorders and patients are not immune from systemic bias. We hope that this study acts as a springboard for future studies to disentangle the specific issues contributing to divergent hospital care in our country and ultimately hope it helps push marginalized patient populations to specialty centers where they can receive the highest possible quality of care.

References

  • 1

    Flores G. Technical report—racial and ethnic disparities in the health and health care of children. Pediatrics. 2010;125(4):e979e1020.

  • 2

    Morrison AK, Brousseau DC, Brazauskas R, Levas MN. Health literacy affects likelihood of radiology testing in the pediatric emergency department. J Pediatr. 2015;166(4):10371041.e1.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 3

    Ravindra VM, Karsy M, Lanpher A, et al. A national analysis of 9655 pediatric cerebrovascular malformations: effect of hospital volume on outcomes. J Neurosurg Pediatr. 2019;24(4):397406.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 4

    Ferriero DM, Fullerton HJ, Bernard TJ, et al. Management of stroke in neonates and children: a scientific statement from the American Heart Association/American Stroke Association. Stroke. 2019;50(3):e51e96.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 5

    Titsworth WL, Scott RM, Smith ER. National analysis of 2454 pediatric moyamoya admissions and the effect of hospital volume on outcomes. Stroke. 2016;47(5):13031311.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • Collapse
  • Expand

Figure from Herta et al. (pp 700–710).

  • 1

    Raygor KP, Phelps RRL, Rutledge C, et al. Socioeconomic factors associated with pediatric moyamoya disease hospitalizations: a nationwide cross-sectional study. J Neurosurg Pediatr. Published March 25, 2022. doi: 10.3171/2022.1.PEDS21339

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 2

    Titsworth WL, Scott RM, Smith ER. National analysis of 2454 pediatric moyamoya admissions and the effect of hospital volume on outcomes. Stroke. 2016;47(5):13031311.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 3

    Smith ER, Scott RM. Moyamoya: epidemiology, presentation, and diagnosis. Neurosurg Clin N Am. 2010;21(3):543551.

  • 4

    Acker G, Goerdes S, Schneider UC, Schmiedek P, Czabanka M, Vajkoczy P. Distinct clinical and radiographic characteristics of moyamoya disease amongst European Caucasians. Eur J Neurol. 2015;22(6):10121017.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 5

    Ghaffari-Rafi A, Ghaffari-Rafi S, Leon-Rojas J. Socioeconomic and demographic disparities of moyamoya disease in the United States. Clin Neurol Neurosurg. 2020;192:105719.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 6

    Riordan CP, Storey A, Cote DJ, Smith ER, Scott RM. Results of more than 20 years of follow-up in pediatric patients with moyamoya disease undergoing pial synangiosis. J Neurosurg Pediatr. 2019;23(5):586592.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 7

    Ferriero DM, Fullerton HJ, Bernard TJ, et al. Management of stroke in neonates and children: a scientific statement from the American Heart Association/American Stroke Association. Stroke. 2019;50(3):e51e96.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 8

    Scott RM, Smith ER. Moyamoya disease and moyamoya syndrome. N Engl J Med. 2009;360(12):12261237.

  • 1

    Flores G. Technical report—racial and ethnic disparities in the health and health care of children. Pediatrics. 2010;125(4):e979e1020.

  • 2

    Morrison AK, Brousseau DC, Brazauskas R, Levas MN. Health literacy affects likelihood of radiology testing in the pediatric emergency department. J Pediatr. 2015;166(4):10371041.e1.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 3

    Ravindra VM, Karsy M, Lanpher A, et al. A national analysis of 9655 pediatric cerebrovascular malformations: effect of hospital volume on outcomes. J Neurosurg Pediatr. 2019;24(4):397406.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 4

    Ferriero DM, Fullerton HJ, Bernard TJ, et al. Management of stroke in neonates and children: a scientific statement from the American Heart Association/American Stroke Association. Stroke. 2019;50(3):e51e96.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 5

    Titsworth WL, Scott RM, Smith ER. National analysis of 2454 pediatric moyamoya admissions and the effect of hospital volume on outcomes. Stroke. 2016;47(5):13031311.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation

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