Being diagnosed with lupus, a chronic and debilitating disease which sometimes causes life-threatening complications, can be devastating for children and their families.
The disease occurs when the immune system attacks healthy tissue instead of fighting infections and requires lifelong immune suppressive therapy and countless doctors’ visits.
At Monroe Carell Jr. Children’s Hospital at Vanderbilt, the Division of Pediatric Rheumatology team focuses on both the physical and mental health of children with lupus.
“We work really hard to take care of the whole patient, not just the patient’s lupus,” said Alaina Davis, MD, a pediatric rheumatologist and assistant professor of Pediatrics at Children’s Hospital. “We pay attention to mental health. Not only can lupus affect the brain and perhaps contribute to psychiatric illness, but the effects of having a chronic disease and managing a complex medical regimen can affect mental health as well. And we know that mental health can have negative effects on medication adherence, quality of life and disease outcome.”
The first step in taking care of patients’ mental health is identifying if they need help, Davis said. So, patients with lupus are screened at every visit for depression in a standardized, formal fashion. “That’s something that’s not being done at most rheumatology centers,” Davis said.
The Division of Rheumatology at Children’s Hospital is part of an international network, Childhood Arthritis and Rheumatology Research Alliance (CARRA), an investigator-led collaborative research network of clinicians focused on pediatric rheumatic diseases, including lupus. Children’s Hospital is part of several workgroups within that alliance, including ones on mental health and transitioning from pediatric to adult care.
Peer support is also a unique aspect of the care provided to patients with lupus by the Children’s Hospital team.