More than a decade into his pediatric otolaryngology career, Romaine Johnson, MD, MPH, had never noticed any correlation between his Black patients and a higher risk for subglottic stenosis (SGS). But when he analyzed more than 350 of his own patient records, the data were clear. And concerning.
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November 2020“It was a shock,” said Dr. Johnson, an associate professor of pediatric otolaryngology at UT Southwestern Medical Center in Dallas. “Our institution’s data suggested they were at a higher risk. Then I looked at national data, and they showed similar findings. I further discovered that African-American children are at a higher risk for all kinds of airway problems, including tracheostomy, severe asthma, laryngeal stenosis, and respiratory arrest in general—even respiratory complications after tonsillectomy.”
Dr. Johnson, who is Black and the medical director of the children’s health airway management program, said macro-level data suggest that social determinants for health put patients on a pathway for certain problems. It’s an issue that has plagued the U.S. healthcare system for decades. While dozens of studies show that social, economic, and cultural disparities play a role in health outcomes, few if any interventions address the problem.
“There are definitely disparities associated with all aspects of the care [otolaryngologists] provide,” said Diego Preciado, MD, PhD, chief of pediatric otolaryngology at Children’s National in Washington, D.C., and president of the American Society of Pediatric Otolaryngology. His team has studied social determinants in childhood hearing loss, including early outcomes after cochlear implantation. “Socioeconomic status can be an indicator of vulnerability in terms of outcome for a lot of the conditions we treat. But [socioeconomic status and outcome], depending on the outcomes you’re looking at, may be more or less directly related.
“For example, when we talk about communication disorders, the reason behind the fact that lower socioeconomic status populations are delayed isn’t always clear,” he continued. “Whether it’s a parental factor, or difficulties with insurance approval, or whether it’s due to trust values in the patient and families, it’s hard to figure out why we have the relationship whereby socioeconomically marginalized populations end up falling behind in their treatment and their outcomes.”
Beyond the Research
It isn’t difficult to find research showing social, economic, or cultural disparities in healthcare, let alone pediatric otolaryngology. According to a systemic review published in 2018 in The Laryngoscope, otologic conditions have been studied the most—61 studies looked at disparities in pediatric otology patients. The most common disparities identified were low socioeconomic status, non-white race, and barriers to accessing care. Only six articles found no disparities in the condition studied (Laryngoscope. 2018;128:1699-1713).
A 2018 study by Kou and colleagues, published in The Laryngoscope, found respiratory events after tonsillectomy were “more common among African-American children” (Laryngoscope. 2019;129:995-1000). Dr. Johnson, the corresponding author on the study, said the takeaway was that “just being Black made a difference.”
Boss and colleagues, in 2010, found that “racial, ethnic, and socioeconomic disparities are prevalent” in pediatric patients diagnosed and treated for sleep-disordered breathing (SDB). “Given the potential negative impact of SBD in children, as well as its economic consequences, the evaluation of disparities should be prioritized in health policy research,” the authors concluded (Int. J Pediatr Otorhinolaryngol. 2011;75:299-307).
A 2016 study by Nieman and colleagues showed that among pediatric patients receiving tympanostomy tubes, those living in high-poverty areas were more likely to receive tubes for otitis media with effusion as opposed to recurrent acute otitis media (Int J Pediatr Otorhinolaryngol. 2016 Sep;88:98-103).
“We’re really good at showing all of this unexplained variation, or variation by socioeconomics, with insurance as a proxy for socioeconomic status, by race or ethnicity,” said Emily F. Boss, MD, MPH, associate professor of otolaryngology, pediatrics, and health policy management, and chief surgical quality officer at Bloomberg Children’s Center at Johns Hopkins in Baltimore, Md. “I could probably find a million studies that can show you that children who are white or privately insured are going to have more elective surgery and fewer complications. I can show you studies for every primary disease in pediatric otolaryngology, including treatment of otitis medium, sinusitis, and obstructive sleep apnea.
“The answer, in terms of how to fix the variation, is multifold,” she continued. “The one area is implicit bias training and recognition: understanding what our biases are and then how we communicate with patients and families, knowing what patients and families understand and what might be less culturally competent. The second area is shared decision-making. You really have to engage every family on what their fears, preferences, and values are.”
When it comes to investigations into determinants of health, using only race is “probably not the right construct, especially in urban environments,” said Stacey Ishman, MD, MPH, a pediatric otolaryngologist and surgical director for the Upper Airway Center at Cincinnati Children’s Hospital Medical Center. She and Dr. Boss worked together at Johns Hopkins and teamed up on a number of health disparity studies. “It’s all about the shared decision-making,” she said, noting that many times the science or best practice doesn’t fit the patient sitting in front of you.
“Nationally, about 90% of kids get tonsils out without a sleep study performed first,” she explained. “At Hopkins, it was standard of care to order a sleep study. What we found was that half of the patients never got a sleep study and never followed up—we were losing them completely from our system … because we sent them for a test first, instead of considering tonsil and adenoid removal as a primary step. That was shocking to me. Some patients don’t need to waste the time, money, and effort. Others say they’ll do anything to avoid surgery. These days I get more family input than I did at the beginning of my career.”