Parental Adverse Childhood Experiences and Health Care Use Among Children With Sickle Cell Disease

Adverse childhood experiences (ACEs) are associated with poor health care use. In African American communities, where ACEs are more prevalent, it is critical to understand the association of ACEs with chronic illnesses, such as sickle cell disease (SCD), in children to expand trauma-informed care and improve outcomes.

To examine the association between parental ACEs and health care use in pediatric patients with SCD, accounting for factors that may influence this association.

This unblinded cross-sectional study was conducted from January 1, 2020, to December 31, 2023, at Arkansas Children's Hospital. Seventy-two of 77 approached caregivers (93.5%) participated. All resided within the Arkansas Children's Hospital catchment area.

Parental ACEs and resiliency were assessed using the Adverse Childhood Experiences Questionnaire (ACE-Q) and the Brief Resiliency Scale, respectively. Neighborhood deprivation was assessed using the Area Deprivation Index (ADI).

Primary outcomes included number of visits to the emergency department (ED), number of missed clinic visits, and medication adherence (categorical outcomes). Independent variables included parental ACEs, parental resilience, and neighborhood ADI. Coefficients were derived from mixed regression models.

The final sample included 79 observations (mean [SD] patient age, 9.73 [4.88] years; 44 [55.7%] female) from 72 caregivers (6 reporting for >1 child), with 70 (88.6%) of ACE-Q respondents being mothers. The ACE risk was low in 32 caregivers (40.5%), intermediate in 33 (41.8%), and high in 14 (17.7%). Patients whose caregivers were at high risk had significantly more ED visits and admissions compared with those whose caregivers were at low risk (regression coefficient = 7.35; 95% CI, 1.77-12.94). Likewise, the number of ED visits and admissions was higher among patients whose caregivers had lower resiliency compared with those with more resilient caregivers (regression coefficient = 5.69; 95% CI, 0.13-11.26). ADI was not significantly associated with ED visits and admissions (regression coefficient = -0.02; 95% CI, -0.12 to 0.08). Parental ACEs were not significantly associated with other metrics of health care use.

This cross-sectional study of ACEs and resiliency in parents of children with SCD found that higher levels of parental ACE scores and lower resiliency were associated with visits to the ED. These findings support the importance of screening caregivers for ACEs and resilience to enhance trauma-informed care, particularly in marginalized populations.