NEW ORLEANS—In medicine, excellence in clinical care does not just mean achieving great outcomes for patients. It also means reducing and eliminating disparities in care between patients of different ethnicities, genders and socioeconomic backgrounds. At the 2023 Pediatric Rheumatology Symposium, speakers in a session titled Health Disparities in Pediatric Rheumatology and Strategies to Mitigate Their Effects eloquently discussed these topics and provided a framework for improving care for children and young adults with rheumatic disease.
Concerns in Research
The session’s first speaker was Jennifer Woo, PhD, MPH, a postdoctoral recipient of the Intramural Research Training Award (IRTA) and fellow at the National Institute of Environmental Health Sciences, Durham, N.C. Dr. Woo noted that the COVID-19 pandemic played an important role in highlighting disparities in healthcare on a global scale. The result has been a focus on diversity, health equity, inclusion and social justice across many medical specialties, including pediatric rheumatology.
Dr. Woo
First, Dr. Woo discussed how she approaches literature reviews on cutting-edge research related to disparities in pediatric rheumatology. By searching PubMed and Web of Science for key terms related to health disparities and culling the data for the years 2021–23, Dr. Woo compiled a selection of review articles and original research articles. Many of the studies she described call attention to the underrepresentation of traditionally marginalized groups and individuals from low- and middle-income groups in pediatric rheumatology research. This issue is important because of the generalizability of data from these studies. Additionally, these marginalized groups tend to suffer from more pronounced disparities in real-life clinical practice.
Many of the studies Dr. Woo found emphasized the concept of race as a social—rather than biological—construct and made distinctions between race and ethnicity.
Some of the research described global health disparities and the difficulty of obtaining accurate data on disease epidemiology. In one study, Al-Mayouf et al. sought to describe the epidemiology and demographics of juvenile idiopathic arthritis (JIA) in Africa and the Middle East. Although the study found the prevalence of JIA in these regions was lower than the prevalence estimates globally, the authors note a significant unmet need for reliable epidemiologic data and disease awareness in these regions. These factors would ensure prevalence estimates are accurate and not due to the under-reporting of and/or a failure to recognize and diagnose JIA.1
Other studies examined factors that contribute to healthcare disparities for pediatric patients across a range of medical conditions. In a study, Soulsby et al. were able to create a “cumulative, social disadvantage score” based on guardian education, household income, insurance status and adverse childhood experiences.2 The authors found the highest odds of having a diagnosis of arthritis were in children with a cumulative social disadvantage score of 4 (i.e., the highest score of this scale) and that increasing scores were associated with increased risk of moderate to severe arthritis.
Looking broadly at pediatric rheumatology research, Dr. Woo noted that limitations exist with respect to recruiting an appropriately diverse group of patients that represents the many strata of society. In essence, there is the true, affected population for any specific pediatric rheumatologic disease and then there is the final research population of individual studies. The former is much larger than the latter because the final research population may not include patients who are untreated or are not treated at a specific research center, those who are excluded due to the selection bias of the research team and/or those who are hesitant to participate in research due to the burden of living with rheumatic disease, the burden of being part of a study and/or other reasons.
Dr. Woo concluded her talk by proposing goals for the field of pediatric rheumatology research. These goals include achieving a high degree of intentionality in how to consider race and ethnicity as part of the interpretation of research data and directly addressing disparities and inequities in care rather than identifying them without taking action to improve the situation.
Dr. Akinsete
Concerns for Clinical Care
The session’s second speaker was Alisha Akinsete, MD, a pediatric rheumatology fellow at the Hospital for Special Surgery, New York. She focused on strategies for mitigating disparities in pediatric rheumatology clinical care.
Dr. Akinsete laid out a rational and step-based approach for mitigation. Her approach includes identifying and monitoring disparities, investigating causes for disparate health outcomes, partnering with susceptible populations to develop interventions, testing interventions for efficacy in populations of interest and evaluating the efficacy of interventions’ efficacy in reducing disparities.
Next, Dr. Akinsete called attention to the current pediatric rheumatology workforce shortage, which is expected to worsen in coming years. Can we expand this workforce while ensuring it also increases in diversity? According to Dr. Akinsete, achieving this goal includes improving clinician retention, which may include financial support for diversity, equity and inclusion work, increased opportunities for individualized mentorship and community engagement geared toward minority groups underrepresented in the rheumatology profession. Other areas of focus include improving recruitment by increasing exposure to rheumatology at historically black colleges and universities, encouraging pediatric rheumatology programs to apply for diversity supplements from the National Institutes of Health and reducing bias during the interview process for prospective medical students, residents and fellows.
On the topic of bias, Dr. Akinsete explained that all individuals, including physicians, have subconscious biases that may influence how they practice medicine and treat different patients. To combat the sometimes deleterious effects subconscious bias may have on clinical care, Dr. Akinsete recommended every doctor seek to:
- Increase their awareness of their own bias;
- Increase their cultural awareness of others;
- Use shared decision-making and teach-back methods;
- Accommodate each patient’s preferred method of communication;
- View people as individuals and not solely as part of a group; and
- View themselves as part of a larger group to increase empathy and trust.
Dr. Akinsete concluded her speech with a discussion of the social determinants of health, which include education access/quality, healthcare access/quality, a patient’s neighborhood and built environment, a patient’s social structures and support within the community, and economic stability. Through a great deal of research, we know social determinants of health can have a huge effect on a patient’s likelihood of developing certain health issues, experiencing a delay in diagnosis and suffering with disease management and treatment when such factors complicate access to high-quality care.
As Dr. Woo noted and Dr. Akinsete further underscored, the issue is not whether the socioeconomic structures of our society play a role in health and healthcare, but how we as a medical community seek to reduce and eliminate the negative effects these variables have on the care and quality of life of our pediatric patients.
Jason Liebowitz, MD, completed his fellowship in rheumatology at Johns Hopkins University, Baltimore, where he also earned his medical degree. He is currently in practice with Skylands Medical Group, N.J.
References
- Al-Mayouf SM, Al Mutairi M, Bouayed K, et al. Epidemiology and demographics of juvenile idiopathic arthritis in Africa and Middle East. Pediatr Rheumatol Online J. 2021;19(1):166.
- Soulsby WD, Lawson E, Pantell MS. Cumulative social disadvantage associated with childhood arthritis: A cross-sectional analysis of the national survey of children’s health. Arthritis Care Res (Hoboken). 2023;75(1):3–8.
