UTSW Rheumatologists: Patients’ Role Vital for Teens Transitioning to Adult Lupus Care: Newsroom





DALLAS – October 4, 2022 – Patients who develop lupus during childhood will eventually transition to adult rheumatology care. In a unique collaboration between UT Southwestern rheumatologists and Children’s Health, investigators conducted a qualitative study, which showed that patients’ health literacy and taking an active role in their own care are important for successful transitions. The findings were published in ACR Open Rheumatology.

Una Makris, MD

“There are significant gaps in care between final pediatric visits and initial adult rheumatology visits, particularly in patients with cSLE,” said Una Makris, MD, associate professor of internal medicine in the Division of Rheumatic Diseases. from UTSW, who joined colleagues from the Division of Pediatric Rheumatology and the Department of Pediatric Rheumatology at Children’s Health for the study. “There are high rates of hospitalizations, emergency room visits, progression to end-stage kidney disease and death,” she said.

SLE is a chronic multisystem autoimmune disease. About 10% to 20% of SLE diagnoses occur in childhood, and these patients often have a worse prognosis than those who occur in adulthood. As LEc patients age out of pediatrics, they must transition from pediatric to adult rheumatologists for their care. However, among the privately insured, a quarter had no scheduled follow-up with an adult rheumatologist within 12 months of their last pediatric visit.

Studies have shown that health literacy is essential for patients with chronic conditions. Health literacy includes the ability to understand health-related documents, social skills to exchange information, the ability to navigate health care systems, and critical thinking to analyze information and exercise greater control over life events and situations.

Dr. Makris and his team, including Nicole Bitencourt, MD, a medical and pediatric trained rheumatologist and senior author of this manuscript, and UTSW medical student Ashley Ciosek (first author), conducted interviews with patients and health care providers to determine perceptions about health literacy and patient activation for successful transition to adult care for cSLE patients.

The research focused on the experiences of young adult patients recently transferred to adult care. Patients with cSLE have reported difficulty understanding disease etiology, clinical course, and rationale for treatment of SLE. Gaps were also noted in patient knowledge about accessing and using health insurance.

“Patients and their caregivers are concerned about their limited level of health literacy regarding lupus, which could translate to the suboptimal care outcomes that we often see in young adults with lupus,” said Ciosek. .

Health literacy interventions are available and should be studied in this population, Dr. Makris added, including multimodal and jargon-free educational materials such as videos, brochures, drawings and online portals, and access increased to psychologists and social workers. Health care teams also endorsed the proposed health literacy interventions while emphasizing the importance of early transition preparation.

The researchers hope that by documenting the specific health literacy challenges faced by cSLE patients, future interventions can aim to fill these knowledge gaps and clinical outcomes for cSLE patients can be improved.

Other UTSW researchers who contributed to this study include Bonnie L. Bermas, E. Blair Solow, and Tracey Wright.

Dr. Bermas holds the Dr. Morris Ziff Emeritus Professorship in Rheumatology.

About UT Southwestern Medical Center

UT Southwestern, one of the nation’s leading academic medical centers, integrates pioneering biomedical research with exceptional clinical care and education. The institution’s faculty has received six Nobel Prizes and includes 26 members of the National Academy of Sciences, 17 members of the National Academy of Medicine, and 14 researchers from the Howard Hughes Medical Institute. Full-time faculty of more than 2,900 are responsible for groundbreaking medical advances and committed to rapidly translating scientific research into new clinical treatments. UT Southwestern physicians provide care in more than 80 specialties to more than 100,000 inpatients, more than 360,000 emergency room cases, and oversee nearly 4 million outpatient visits annually.



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