Background/Purpose: Adverse childhood experiences such as extreme deprivation, neglect, abuse, parental separation or incarceration, have been associated with adult health status, including onset of rheumatic diseases. It has been hypothesized that cumulative trauma may have long term effects on immune regulation, putting children at greater risk for autoimmune disease as adults. However, there has been no research on the association of adverse experiences in childhood with outcomes of rheumatic diseases. In this analysis, we examine the association of adverse experiences in childhood with disease activity and damage, depression, and quality of life among adults with systemic lupus erythematosus (SLE).

Methods:   Data were derived from the California Lupus Epidemiology Study (CLUES), a population based, multi-ethnic cohort of patients with SLE begun in 2015. Participants completed an extensive interview including validated self-report measures of SLE activity (Systemic Lupus Activity Questionnaire; SLAQ) and damage (Brief Index of Lupus Damage; BILD), quality of life (SF-36), depression (Patient Health Questionnaire; PHQ-8) and sociodemographic measures.  They also completed the Adverse Childhood Experiences (ACE) questionnaire, a validated  8-item scale included in the Behavioral Risk Factor Surveillance System, covering parental separation, mental illness or suicide, incarceration, dysfunction due to drugs or alcohol, and verbal, physical or sexual abuse prior to age 18. Each endorsed item is given one point, and the scores were categorized as 0, 1, 2-3, and ≥4. We compared SLE outcomes by ACE score categories using ANOVA.  

Results:    To date, 126 CLUES participants have completed the ACE questionnaire. Participants were mostly women (88%) and racially diverse (30% white, 23% Hispanic, 15% African American, 30% Asian American).  Mean age was 44±14; mean age at diagnosis 27±12. Among the individual ACE items, parental separation or divorce was most commonly reported (34%), but nearly all the items were endorsed by at least 10% of participants. Median ACE score was 1, and 20 (16%) had a score of 4 or higher. ACE scores ≥4 were more common in Hispanic (24%) and African American (37%) participants, and in participants with poverty level income (50%). Scores did not differ by age at study entry or diagnosis. Higher ACE scores were associated with greater SLE activity and damage, poorer quality of life, and higher levels of depressive symptoms (Table).  

Conclusion:   Adverse childhood experiences are reported frequently among individuals with SLE and appear to be associated with poor SLE outcomes. As the cohort expands, we will compare ACE scores in the cohort to the general population and examine the associations between childhood experiences and SLE outcomes in a multivariable context that takes into account sociodemographic differences.