Introduction:
Adverse childhood experiences (ACEs) are a collection of maltreatments that occur before the age of 18, encompassing the domains of abuse, neglect, and household dysfunction. ACEs were first studied in 1998, when the landmark Kaiser-CDC study demonstrated a dose-dependent negative impact of ACEs on adult health conditions including ischemic heart disease, cancer, substance abuse, and depression.1 Since then, those findings have been confirmed2 and have been linked to earlier onset of chronic disease.3
The biology linking ACEs to risk of disease is postulated to be related to increased levels of stress hormones, referred to as toxic stress. Childhood toxic stress is “severe, prolonged, or repetitive adversity with a lack of the necessary nurturance or support of a caregiver to prevent an abnormal stress response.”4 Accumulation of toxic stress can lead to a persistent inflammatory response, epigenetic modification, and telomere shortening.5–7The cumulative nature of ACEs was estimated in 2019 to have an annual cost to North America of more than $748 billion US dollars in disability adjusted life years.8 In addition, researchers have demonstrated the manifestations of ACEs in children and adolescents, including learning and behavior issues, substance use and abuse, obesity, depression, anger, and suicidality.9,10
The 2017-2018 National Survey of Children’s Health (NSCH) estimates that 30 million (42%) US children have experienced at least one ACE, and 62.3% of children with more complex health needs have at least 1 ACE.11 Furthermore, the NSCH shows that ACEs are increased in certain populations, including children from low socioeconomic backgrounds and minority race and ethnicity.11 There is a paucity of research into ACEs in children with chronic illnesses, though elevated ACE scores are associated with increased prevalence of asthma, attention deficit-hyperactivity disorder, and autism.12-14
To date, there have been no studies evaluating ACEs in people with cystic fibrosis (CF). However, the CF Foundation and the European CF Society currently recommend screening for and, when present, treating depression and anxiety.15 There are significant health outcome disparities in CF: affected people who are racial and ethnic minorities and/or of lower socioeconomic status have an increased risk of mortality from CF before the age of 18,16 and Hispanic CF patients have a higher mortality, even after adjusting for clinical severity.17 ACEs are more frequent in minority and low socioeconomic populations, and thus ACEs may contribute to disparities in health in CF. The comprehensive multidisciplinary care at CF centers could facilitate screening and appropriate intervention, as demonstrated by implementation of the mental health screening guidelines.
Due to the sensitive nature of ACE screening, the purpose of this study was to educate our CF population about ACEs and survey patient preferences for future ACEs screening.