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.
Explore This IssueNovember 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.”
Low health literacy and limited access to specialty care are common challenges in rural and economically depressed areas, according to Hassan Ramadan, MD, MSc, professor and chair of the department of otolaryngology–head and neck surgery at West Virginia University in Morgantown. In West Virginia, a mountainous state with a low population density and providers concentrated in bigger cities, environmental barriers impact all areas of patient care. One particular area of concern, he said, is the high incidence of smoking in his state.
There probably is a lack of community-based participatory research, at least in pediatric otolaryngology. We have to really get out and say, “What do you need, and how can we connect with your community?” —Emily F. Boss, MD, MPH
“Secondhand smoke for kids, especially kids with allergies or asthma, may lead them to have issues with their asthma,” said Dr. Ramadan. “There aren’t enough providers to serve the needs of the populations in these [small] communities. Many have to travel long distances to get access to care, so these kids don’t go to get allergy treatment. All these factors will have an impact on the health of the population.”
Transportation, technology, and access to specialists aren’t solely rural issues. In fact, Dr. Ishman noted that Medicaid provides low-income patients a few advantages: no copays and coverage for most medications, including Tylenol, with no out-of-pocket cost. “It’s more of a concern that the patient can find reliable transportation to pick up the medicine or have enough minutes on their cell phone to set up appointments,” she said. “Those issues are in contrast to patients in the next tier up, meaning those who are working but don’t necessarily have health insurance or have really high deductibles.”
Dr. Ramadan said he would trade additional research for additional resources to help patients navigate a complex healthcare system. “We all talk about what the problems are, but nobody has provided a solution,” he said. “I believe it can be multi-factorial and can be related to certain geographic areas. It all boils down to resources for support. The other issue is the education and awareness. We need to work on the health literacy of the population. That takes resources.”
Implicit Bias or Social Conditioning?
Every provider has some unrecognized bias that needs to be identified, understood, and eliminated, Dr. Preciado said. Training in this area is sparse, added Dr. Boss, especially with regard to the way otolaryngologists deliver complex information to their patients.
“We have to recognize the biases for all populations, not just the underrepresented minority populations,” said Dr. Boss. “You can have kids with the same problem and all the same test results, and the families will have very different wishes of how they’d go about care.”
Dr. Johnson said social conditioning is real and plays out in the background of every medical practice, noting a recent study showing infant mortality drops for Black children if they are just assigned a Black physician (Proc Nat Acad Sciences. 2020;117:21194-21200). He said otolaryngologists, no matter the background, training, or location, have to ask tough questions and be willing to change.
“Are we more likely to recommend tympanostomy tubes to the child of a white mother who has a higher education and more money than we are to the child whose Black mom works in the cafeteria? Maybe, maybe not. Will you have special hours for Medicaid kids, or do you not even see Medicaid kids, period? I understand the financial issues for some not seeing these children. But if you do it, do you separate them out from others? If you do, that conditions you to think about those patients in a certain way.”
It’s ridiculous to think we can separate socioeconomic issues from health issues. People don’t even walk in the door if they don’t think they can afford the care. —Stacey Ishman, MD
Dr. Johnson also said bias can cut both ways in terms of assuming families with private insurance will process complex information more easily or will better understand the need for follow-up care. “There are strategies around standardizing care and using more evidence-based, standardized protocols in terms of reducing that variation we see,” Dr. Boss said. “There probably is a lack of community-based participatory research, at least in pediatric otolaryngology. We have to really get out and say, ‘What do you need, and how can we connect with your community?’”
Prior Knowledge of Socioeconomic Status
Experts differed in their approaches to understanding patients’ socioeconomic status. All agreed patient care shouldn’t be based on insurance type or ability to pay. Dr. Ramadan pointed to a 2018 study that concluded that otolaryngologists do not “exhibit any disparate healthcare access bias in providing MT to children with otitis media” (Laryngoscope. 2018;128:2898-2901). Dr. Boss concurred but also pointed out that physicians have “preconceived notions about what parents will choose for their children, or they would proceed with care based on routine or history of treating different populations.”
Dr. Johnson, however, sees it differently. As a surgeon placing tracheostomies in children, he said he must have prior knowledge of a patient’s home life. He doesn’t see a parent’s ability to manage the recommended post-operative care as prejudiced or biased.
“A child with a trach needs 24-hour care,” he said. “If [the family] can’t support a kid with a tracheostomy, we have to make some changes. If you have a kid on a ventilator and they live in a third-floor apartment with no elevator, how are they going to carry the vent up and down the steps? What if they don’t have reliable access to electricity or a telephone? You can’t have that situation. You have to be able to call 911 in the event of a problem.”
The key, Dr. Ishman said, is to always include patients in decision-making. “If you can do that, it helps you get beyond some of the bias of how you approach patients. It’s ridiculous to think we can separate socioeconomic issues from health issues. People don’t even walk in the door if they don’t think they can afford the care. I’m less worried about the people who walk in my office and don’t come back than those who don’t ever walk into the office.”
Richard Quinn is a freelance writer in New Jersey.