Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Division of Pulmonary and Critical Care Medicine, Department of Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Pediatr Pulmonol. 2021 May;56(5):921-927. doi: 10.1002/ppul.25243. Epub 2021 Jan 12.
The 2017-2018 National Survey of Children's Health estimates that 30 million (42%) US children have experienced at least one adverse childhood experience (ACE), including abuse, neglect, and household dysfunction. ACEs negatively impact long-term health, and there has been no study of ACEs in cystic fibrosis (CF). We assessed willingness to disclose ACEs experienced by children with CF by surveying their parents and adults with CF.
We anonymously surveyed parents of children with CF and adults with CF at the Northwestern University/Lurie Children's CF Center to determine their willingness to disclose ACEs.
The survey was completed by 46/157 (29%) parents and 36/105 (34%) adults with CF. Few parents (22%) and adults (17%) were willing to discuss most or all specific ACEs, more were willing to disclose the number of ACEs experienced in a category (57% parents, 47% adults), and the majority were willing to participate in anonymous research about ACEs (76% parents, 67% adults). Most parents (63%) and adults (50%) would prefer to have ACEs screened separately from their CF appointment, and most parents (63%) and adults (56%) wanted to learn more about ACEs from a member of their care team.
Participants preferred to disclose the number of categorical ACEs rather than specific ACEs and most were open to participating in anonymous ACEs research. More research is needed before implementing screening. Educating patients, parents, and providers about ACEs and appropriate interventions when ACES are identified is needed for both research and clinical applications of ACEs screening.
2017-2018 年全国儿童健康调查估计，美国有 3000 万（42%）儿童至少经历过一次不良儿童经历（ACE），包括虐待、忽视和家庭功能障碍。ACE 对长期健康产生负面影响，而囊性纤维化（CF）中尚未有 ACE 的研究。我们通过调查儿童 CF 患者的父母和成人 CF 患者来评估他们对 CF 患者经历 ACE 的披露意愿。
我们在西北大学/卢里儿童医院 CF 中心对儿童 CF 患者的父母和成年 CF 患者进行了匿名调查，以确定他们愿意披露 ACE。
共有 46/157（29%）名父母和 36/105（34%）名成年 CF 患者完成了调查。很少有父母（22%）和成年人（17%）愿意讨论大多数或所有特定 ACE，更多的人愿意披露某一类别的 ACE 经历次数（57%的父母，47%的成年人），大多数人愿意参与 ACE 匿名研究（76%的父母，67%的成年人）。大多数父母（63%）和成年人（50%）希望 ACE 筛查与 CF 预约分开进行，大多数父母（63%）和成年人（56%）希望从护理团队成员那里了解更多关于 ACE 的信息。
参与者更愿意披露类别 ACE 的数量，而不是特定的 ACE，大多数人愿意参与匿名 ACE 研究。在实施筛查之前，还需要进行更多的研究。需要对患者、父母和提供者进行 ACE 教育，并在识别 ACE 时提供适当的干预措施，以便将 ACE 筛查用于研究和临床应用。
