Relation of adverse childhood experiences to clinical and patient-reported outcomes for adults with sickle cell disease

Abstract

BACKGROUND: Adverse childhood experiences (ACEs) are stressful or traumatic events prior to age 18 that are known to have a lasting impact on individuals' health and well-being. There is a gap in understanding the relationship between ACEs and Other Life Stressors and health status for adults with sickle cell disease (SCD). We examined the impact of adversities within clinical and behavioral health domains that have been associated with ACEs for other populations.

PROCEDURE: Sociodemographics; medical history; patient-reported outcomes, including pain and emotional distress; and reports of de-identified ACEs and Other Life Stressors, were collected from n = 553 participants enrolled in the Sickle Cell Disease Implementation Consortium Registry.

RESULTS: Participants were a median age of 28 years; 57% female; 95% Black/African American; 55% annual household income ≤$25,000; primarily diagnosed with sickle cell anemia (SS or Sβ0 thalassemia: 69.6%). Adults with SCD evidenced a high prevalence of exposure to adversity (28.3% reporting four or more ACEs), significantly higher than general or Black/African American populations (p < 0.001). Adjusting for age, gender, SCD genotype, annual household income, and disease-modifying therapy, we found a graded effect for categories of original ACEs (one to three, and four or more), with progressively greater odds of being diagnosed with asthma with increasing ACEs (p <0.0001), as well as for "ever been treated for depression" (p < 0.05).

CONCLUSIONS: Our findings support the need for consistent screening for ACEs in adults with SCD and highlight the importance of trauma-informed care approaches to improve clinical and behavioral outcomes and quality of life.