Sleep Health and Youth’s Sociocultural and Neighborhood Context in Childhood Systemic Lupus Erythematous

About This Grant

Project Summary Abstract Childhood systemic lupus erythematosus (cSLE) is a chronic, inflammatory autoimmune disease that accounts for 10%-20% of all SLE diagnoses, and is associated with significant pain, fatigue, and cardiovascular morbidity. cSLE is more prevalent in non-Hispanic Black (Black) and Hispanic youth, who, in the U.S., have 80% heightened disease prevalence and are known to experience worse health outcomes, greater disease severity, and less access to care compared to non-Hispanic White (White) youth. Pain, fatigue, anxiety, and depression are interrelated and common in cSLE,and contribute to increased healthcare use and lower health-related quality of life (HRQoL). Our pilot findings in a diverse sample of youth with cSLE demonstrate associations between sleep health (duration, efficiency, regularity, sleepiness) and cSLE symptoms. Inadequate sleep duration, irregularity in sleep timing, poor sleep efficiency, as measured by actigraphy and symptoms of insomnia, predicted worse next day pain and were related to increased pain, fatigue, higher levels of anxiety and depressed mood, and lower HRQoL. Few studies have examined sleep in cSLE - highlighting a current research gap. In adults with lupus, poor sleep health is predictive of worse pain, fatigue, anxiety, and depression. Sleep is a modifiable behavior that is not routinely assessed in pediatric rheumatology care. Further, Black and Hispanic youth experience greater sleep health disparities, have increased risk for cSLE disease prevalence, potentially placing them at higher risk for worse cSLE symptoms. Black and Hispanic youth represent 40% of U.S. youth, underscoring the importance of focusing on these populations to address sleep health as an intervention target. Sociocultural factors such as family sleep beliefs and practices, family/social support, acculturation, stress, and socioeconomic status; and neighborhood characteristics such as social cohesion, economic disadvantage and safety are known resilience and/or risk factors associated with sleep health and HRQoL. Yet these social factors are understudied in youth with cSLE, and their contribution to sleep, fatigue, and mental health is poorly understood, which impedes effective intervention. We propose a mixed methods study that includes a multicenter cohort of 200 youth with cSLE, with a focus on recruiting Black and Hispanic youth, 13-to-17 years, and their parents recruited from 3 pediatric rheumatology centers in the U.S.; enriched with qualitative data on a subgroup of 30-36 youth-parent dyads to understand sociocultural beliefs and practices about sleep. cSLE represents a uniquely vulnerable group due to its combination of systemic inflammation, neurocognitive risk, high treatment burden, and disproportionate prevalence among Black and Hispanic youth. Findings will help clinicians prioritize screening and treatment for poor sleep health; alter clinical care in the management of cSLE to reduce symptoms; and inform a culturally tailored sleep intervention.