An important retrospective observational study showcasing risks faced by patients with child-onset lupus could at some point lead to decisions that lead to life or death. The stakes are critical as this autoimmune disease can turn into end-stage renal disease and death. But what if there was a way to identify prime areas for intervention to help protect lupus patients? UT Southwestern researchers have just further contributed to that cause, identifying factors that place lupus patients at elevated risk for poor outcomes, including death during the transition of the lupus patient from childhood to adult life. One striking finding here: those on public insurance (e.g. Medicaid), less financially ahead, and Black and Hispanics face greater risk of poor outcomes including end-stage renal disease and death.
A premise underlying this recent UT Southwestern study involves the challenges of patients with chronic disease, transitioning from childhood, where they often receive significant support in managing their conditions as children, to the transition where they are expected to take on much more responsibility for their health care as become an adult reports study lead author Bonnie Bermas, MD, professor of internal medicine at UTSW.
So, for example, research reveals that patients with chronic diseases such as HIV and sickle cell disease tend to have poor outcomes during this time of transition. As an adult rheumatologist who cares for young adult patients with childhood-onset lupus erythematosus, an autoimmune disease, Bermas says she has witnessed a similar phenomenon. However, it’s unclear what factors put young lupus patients who transition to adult care at higher risk.
To explore this question, Nicole Bitencourt – a former UTSW pediatric and adult rheumatology fellow who is now on the faculty of the University of California Los Angeles Medical Center – along with Bermas and her UTSW colleagues used medical records to identify childhood-onset lupus patients who transitioned to adult care between 2010 and 2019. These 190 patients were seen at two different rheumatology clinics; one is a safety-net hospital that mainly treats patients with public insurance; the other is a university hospital that primarily sees patients with private insurance.
The researchers followed patients for an average of nearly 3.5 years and looked at three major outcomes: time to the first hospitalization following a patient’s final pediatric rheumatology visit; time to end-stage renal disease, a condition in which severe kidney failure necessitates dialysis; and death.
Of the 190 patients, 11 percent developed end-stage renal disease and 5 percent died during the follow-up period. Out of 114 patients with hospitalization data, 53 percent were hospitalized as young adults.
Findings: Several Risk Factors for the Transitioning Lupus Patient
The research team found several factors linked with these poor outcomes. End-stage renal disease and death were associated with having public health insurance, a history of Child Protective Services involvement, and an unscheduled hospitalization during the final year of pediatric care. A shorter time to hospitalization in adult care was linked with a pediatric outpatient opioid prescription and Black race or Hispanic ethnicity.
Real World Implications
Bermas, the Dr. Morris Ziff Distinguished Professor in Rheumatology, notes that these findings could help health care providers better target childhood-onset lupus patients who might be at higher risk of poor outcomes during their transition to make sure they have the support and resources needed to stay healthy after they become adults.
“Transitioning to young adulthood has its own challenges, but these patients are struggling with a chronic disease on top of that. We’re asking an awful lot of these patients to navigate the medical system, often with little support,” says Bermas. “By identifying those patients who may need more help, we can improve outcomes and even potentially save lives.”
Social Determinants of Health
TrialSite suggests that investments in proactive whole person care coordination and management for those children deemed at risk could make a difference for later in life. This is backed by recent research from the Centers for Disease Control and Prevention National Lupus Registries evidencing higher susceptibility of both systemic lupus erythematosus (SLE) and primary cutaneous lupus among minority groups as compared with the white population. This important studies reveal not only that SLE impacts racial and ethnic minorities disproportionately but also individuals in these cohorts (e.g. Hispanic, Black) face higher risks for severe manifestations of the disease and death. For example, mortality rates for lupus patients are higher in blacks as compared with whites. The social determinants of health emerge as a key set of factors to understand to improve health care for all members of society.
In addition to UTSW, this study was supported by a Children’s Clinical Research Advisory Committee grant from Children’s Health.
About UT Southwestern Medical Center
UT Southwestern, one of the premier academic medical centers in the nation, integrates pioneering biomedical research with exceptional clinical care and education. The institution’s faculty has received six Nobel Prizes, and includes 23 members of the National Academy of Sciences, 17 members of the National Academy of Medicine, and 13 Howard Hughes Medical Institute Investigators. The full-time faculty of more than 2,500 is responsible for groundbreaking medical advances and is committed to translating science-driven research quickly to new clinical treatments. UT Southwestern physicians provide care in about 80 specialties to more than 105,000 hospitalized patients, nearly 370,000 emergency room cases, and oversee approximately 3 million outpatient visits a year.
Bonnie Bermas, MD, Dr. Morris Ziff Distinguished Professorship in Rheumatology, Internal Medicine—Rheumatology and Rheumatology Disorders
Call to Action: If you have a child currently diagnosed with lupus, consider this study for identification of at least some of the risk factors involved for the transition to adult life.