Patients with cystic fibrosis (CF) have experienced trauma as children including those related to medical procedures, a new study published in Psychology Research and Behavior Management found.

Patients with CF with adverse childhood experiences “may have increased risks of emotional and physical difficulties and may benefit from additional support,” the authors of the study said.

People with CF may be at an increased risk of experiencing traumas related to having to undergo frightening procedures during childhood. They may also be more likely to be neglected or maltreated by others due to their condition. Yet, there are no data about the prevalence of adverse childhood events in these patients.

In the present study, a team of researchers led by Jamie M Duckers, MD, from the All Wales Adult Cystic Fibrosis Service at Cardiff and Vale University Health Board in Llandough, UK conducted an exploratory study to identify the prevalence of adverse childhood experiences in adults living with CF. The team measured the exposure of 80 patients with CF to 16 adverse childhood events using the adverse childhood experience questionnaire as well as measures of psychological well-being.

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They found that the majority (78%) of the patients experienced at least one type of adverse childhood experience. A total of 11 patients reported having experienced at least 4 adverse childhood experiences. Among these, the most commonly reported adverse childhood experiences were the divorce or separation of the patient’s parents and verbal abuse. 

More than half of patients (64%) also reported experiencing “a painful or frightening medical procedure” during childhood and 23% reported “feeling forced to have treatment or a procedure.”

Assessing the effect of the disease on early life can ensure patients receive the best care possible, which takes into account these traumas, the authors concluded.

Reference

O’Leary C, Edwards V, Hardcastle KA, McCulloch A, Duckers JM. Adverse childhood experiences (ACEs) in adults with cystic fibrosis. Psychol Res Behav Manag. 2022;15:1601-1605. doi:10.2147/PRBM.S322425