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.