Adverse childhood experiences in children and adolescents with sickle cell disease: A retrospective cohort study

Abstract

Background Adverse childhood experiences (ACEs) are linked to poor health outcomes; however, the relationship between ACEs and health outcomes among children and adolescents with sickle cell disease (SCD) has limited documentation in the published literature. Procedure This retrospective cohort study involved 45 children and 30 adolescents. Participants were screened using the Center for Youth Wellness ACE Questionnaire. Parents completed the questionnaire for children. Adolescents provided self‐report. ACEs were treated as continuous and categorical scales: 0–1 verus ≥2 original ACEs (individual and/or familial level); 0–1 versus ≥2 additional ACEs (community level); and 0–3 versus ≥4 expanded ACEs (original + additional). Pain and acute chest syndrome events were compared using Wilcoxon rank‐sum tests, and correlated with cumulative ACE scores using Spearman's correlation. Multivariable models were fitted to examine the association between ACEs and pain/acute chest syndrome. Results The cumulative number of original ACEs positively correlated with acute chest syndrome events (rho = .53, p = .003) and pain (rho = .40, p = .028) among adolescents. Adolescents with ≥2 versus 0–1 original ACEs had a higher number of acute chest syndrome events (4.9 ± 2.6 vs. 1.6 ± 2.2, p = .002); however, this association was confounded by asthma. Acute chest syndrome events and hospitalizations for pain did not differ among child ACE groups. Emergency department (ED) pain visits were higher among children with ≥4 versus 0–3 expanded ACEs (1.6 ± 2.8 vs. 3.3 ± 3.2, p = .042), even after controlling for SCD genotype, asthma, disease‐modifying treatment, and follow‐up years (p = .027). Conclusion ACEs are linked to increased morbidity among children and adolescents with SCD. Prospective studies are needed to further understand this relationship and test ACE‐protective remedies.

Mental health assessment of youth with sickle cell disease and their primary caregivers during the COVID‐19 pandemic

“…[2][3][4] Social, economic, and disease-related factors render youth with SCD and their caregivers susceptible to mental health issues; for example, depression and anxiety. [5][6][7][8][9][10][11] Among adolescents with chronic health conditions, depressive symptoms are associated with less disease self-management and more disability and hospitalization. 12 Societal disruptions during the 2020 COVID-19 pandemic disproportionately affecting communities with lower socio-economic and greater minority status, included prolonged school and workplace closures, social isolation, economic insecurity, and impaired mental health, such as depression, anxiety, loneliness.…”

“…Most people living with sickle cell disease (SCD) in the United States identify as Black and/or Latino, 1 whose communities are disproportionately underresourced and vulnerable to adverse social factors 2–4 . Social, economic, and disease‐related factors render youth with SCD and their caregivers susceptible to mental health issues; for example, depression and anxiety 5–11 . Among adolescents with chronic health conditions, depressive symptoms are associated with less disease self‐management and more disability and hospitalization 12 …”

“… 2 , 3 , 4 Social, economic, and disease‐related factors render youth with SCD and their caregivers susceptible to mental health issues; for example, depression and anxiety. 5 , 6 , 7 , 8 , 9 , 10 , 11 Among adolescents with chronic health conditions, depressive symptoms are associated with less disease self‐management and more disability and hospitalization. 12 …”

A rapid evidence assessment of sickle cell disease educational interventions

“…Hence, there is a need for prompt medical intervention. However, delays and variations in pain assessment and management have led to SCD patients being admitted with longer hospital stay (Jenerette et al, 2016 ; Masese et al, 2019 ; NICE, 2014 ; Pernell et al, 2022 ). In 2012 and 2014, the UK and US departments of health, respectively, released guidelines with recommendations for the care of SCD patients with acute sickle cell pain in the ED (National Heart Lung and Blood Institute (NHLBI), 2014 ; NICE, 2014 , 2012 ).…”