Unraveling the Social Barriers to Pediatric Rheumatology Care

By Vandana Suresh | Sept 20, 2023

Despite having high-quality health care, access to medical care is not equitable across different populations in the United States. Additional barriers posed by socioeconomic and cultural factors can substantially limit the care provided to those in need.

To address this care gap within her geographic community, Sheetal Vora, MD, MSCE, professor of pediatrics at Wake Forest School of Medicine in the division of pediatric rheumatology at Atrium Health Levine Children’s Hospital, will dedicate her 2022 Diversity, Equity and Inclusion (DEI) award toward more deeply understanding the care-seeking journeys of children and caregivers with a focus on social determinants. This information will help her team develop interventions that facilitate prompt referrals and diagnoses of children with rheumatic disease living in Charlotte, North Carolina, and its surrounding areas.

“Instead of expecting families to come to us, we need to meet them where they are, and for that to happen, we need to understand their sociocultural environments,” she says. “Ultimately, we want the children to get correctly referred so they can get the care they need as early as possible.”

Charlotte, the most populous city in North Carolina, has a commensurately mixed demographic. Although the Atrium Health Levine Children’s Hospital is within the city of Charlotte, Dr. Vora attends to patients from the larger metro area and up to 450 miles around the city. Recognizing that she is one of the few pediatric rheumatologists catering to a vast geographical location, Dr. Vora analyzed survey data to understand where pediatric patients with chronic diseases, including rheumatic conditions, went for their primary care services and how many of those patients were referred to the Atrium Health Levine Children’s Hospital.

“We found that in five years, about 2,000 patients could have been referred to us based on their symptoms. But only five were referred, and all had a serious rheumatic condition,” says Dr. Vora. “So, it was natural for us to focus on the other children and ask why they were not getting referred. What are the problems? What are we missing?”

Most of these children visited safety-net clinics that are the primary care delivery sites for Medicaid and non-insured minority and low-income populations with a high burden of chronic illness. These sites became the target population for Dr. Vora to increase referrals. With support from the DEI award, she will investigate how cultural and socioeconomic barriers — such as annual income, race, transportation, parental education, patient age, geographic proximity to care and medical insurance — prevent children from getting correct treatment. In particular, she will compare the children who are referred correctly with those who go through repeated hospitalizations and miss being diagnosed.

“It is a two-pronged problem,” says Dr. Vora. “Families may simply not have money, or they don't know how to navigate the health care system. And then, physicians at the safety-net clinics may not put all the symptoms together for rheumatic disease until the patient gets very ill, and the child ends up in the ER.”

Based on her initial findings, Dr. Vora has already developed an access triage form to be completed by referring providers at the safety-net clinics to assist Atrium Health Levine Children’s Hospital referral coordinators in appropriately triaging all children based on their symptoms for chronic disease. In this way, a pediatric rheumatologist can see children needing immediate attention for rheumatic diseases sooner. The form also queries the patient's family on any barriers preventing their child from getting the care they need.

“Our team’s work on improving timely access holds the potential for improved attention to diversity, equity and inclusion for all children through an understanding of the experiences our children and their families encounter while seeking a rheumatic diagnosis,” says Dr. Vora.