Introduction:
Adverse childhood experiences (ACEs), such as witnessing domestic abuse or experiencing physical/sexual abuse, are associated with poorer long-term health outcomes, including acquired cardiovascular disease. This study offers the first investigation of ACEs in adults with congenital heart disease (CHD).
Methods:
In this cross-sectional study, adult CHD outpatients completed the ACE Questionnaire, the Relationship Scales Questionnaire, the Perceived Stress Scale, and a 0 - 100 linear analogue scale of quality of life. Total scores on the ACE Questionnaire range from 0 - 10 (a point for each ACE reported) and scores ≥ 4 are associated with poorest health outcomes. We performed correlations, t-tests, and analyses of variance to explore relationships between ACE Questionnaire scores and demographics, medical variables, and other survey scores.
Results:
A total of 100 patients were enrolled in the study (40 ± 13 years; 60% female). Ninety percent had defects of moderate or great complexity and 79% were categorized as American Heart Association anatomy + physiology stage B, C or D (i.e., some degree of symptoms and/or functional impairment). Total scores on the ACE Questionnaire ranged from 0 - 9, with a mean of 2.6 ± 2.5; 30% reported ≥ 4 ACEs. The most frequently reported ACEs were parental divorce (46%), emotional abuse (42%), and parental substance abuse problem (32%). ACE Questionnaire scores did not differ as a function of age, sex, defect complexity, or anatomy + physiology stage. However, total ACE score was significantly correlated with all 4 relationship styles (secure, preoccupied, dismissive and fearful; p-values < 0.05). Quality of life scores were lower among those with elevated ACEs, although this did not reach statistical significance (69 vs. 76, p = 0.07).
Conclusion:
It is well accepted that adults with CHD face many health-related challenges throughout their lives. This study serves as an important reminder to providers that many patients will also experience other significant (and potentially traumatic) stressors in childhood. Further research is needed to determine whether the impact of ACEs on adults with CHD extends beyond relationship and stress outcomes and also includes cardiac morbidity and mortality.
ESTABLISHMENT OF THE NEW YORK STATE CONGENITAL HEART SURGERY COLLABORATIVE FOR LONGITUDINAL OUTCOMES AND UTILIZATION OF RESOURCES: A STATEWIDE, MULTI-SOURCE, DATABASE TO ASSESS LONGITUDINAL HEALTH OUTCOMES, EXPENDITURES AND HEALTH EQUITY FOR CHILDREN WITH CONGENITAL HEART DISEASE