Hispanic children diagnosed with brain tumors get high-quality treatment at hospitals that specialize in neurosurgery far less often than other children with the same condition, potentially compromising their immediate prognosis and long-term survival, according to research from Johns Hopkins published in October's Pediatrics.
More than a decade after the Institute of Medicine's landmark report Crossing the Quality Chasm, the Hopkins investigators say their findings detect persistent gaps in access to specialized care among certain patients, raising questions about how far across the chasm we have actually come.
"What was shocking to us was the finding that, despite the push over the last decade to equalize access to high-quality care, gaps are still there, particularly among Hispanics, and, if anything, they may be getting even worse," said lead investigator Raj Mukherjee, M.D., M.P.H., a postdoctoral fellow in the Department of Neurosurgery at Hopkins.
Research has shown that patients treated at specialty hospitals that admit a high volume of patients with similar conditions fare better in the long and short term, investigators say. For example, studies show that patients undergoing brain surgeries in hospitals that perform the fewest neurosurgeries have up to 16 times the mortality rate of patients treated in hospitals performing the highest number.
"Given that brain tumors are the most common solid tumors in children, lack of access to specialized care simply means that thousands of pediatric patients are getting less-than-optimal treatment, putting them at risk for relapse and a host of neurological complications," says pediatric neurosurgeon George Jallo, M.D., co-author on the study and director of Neurosurgery at Johns Hopkins Children's Center.
The Hopkins study, which looked at 4,421 children with brain tumors over the span of 18 years, found that access was worst among Hispanics, as well as among those of lower socio-economic status and those living in areas with higher immigrant population and with few neurosurgeons. Insurance did not play a role in where a patient was treated, the researchers found. The Hopkins team linked two databases—one detailing hospital and patient information and another one with demographic and environmental information—elucidating in a novel way the impact of such factors as ethnicity and proportion of foreign-born people in the county of residence.
Overall, only 37 percent of the patients in the study who should have been treated at a high-volume hospital had surgeries in such institutions. Hispanics consistently fared worse than the others: Even when adjusting for factors that may affect access to care, such as socioeconomic status and health insurance, Hispanic children still got specialized care at one-third the rate of other children, the Hopkins team found.
"If you're a Hispanic child diagnosed with a brain tumor, you're far less likely to get the best possible treatment, and this is concerning in and of itself, but there's another looming threat emerging from our findings," said senior investigator Alfredo Quiñones-Hinojosa, M.D., associate professor of Neurosurgery and Oncology at Hopkins. "Hispanics will make up 25 percent of this country's population by the year 2050, so unless we do something about this, it looks like in the next few decades, a quarter of our population may end up getting substandard care."
"Our findings are yet another reminder that we are at a unique crossroad in history as we try to restructure our healthcare system, and we have been given a chance to reduce, perhaps even eliminate, these inequalities once and for all," Quiñones adds.
Researchers say that pinpointing the exact factors that determine who gets care and where they get it requires carefully designed studies that examine individual patient decision-making, as well as systemic factors, such as insurance and possible institutional bias in patient selection.
The research was funded in part by the Howard Hughes Medical Institute, the Children's Cancer Foundation and Johns Hopkins Center for Innovative Medicine.
Co-investigators in the study include Thomas Kosztowski, B.S.; Hasan Zaidi, B.S.; Benjamin Carson, M.D.; and David Chang, Ph.D., M.P.H., M.B.A.
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