Discussion:
Although enthusiasm and support for screening ACEs flourishes in the literature,19 screening is not routinely performed in primary care or subspecialty practices for children or adults. Many valid concerns for the surveillance of ACEs have been raised, such as the narrow scope of ACE questionnaires, whether to ask about ACEs categorically or specifically, and how to best address a positive ACE finding.20,21 The answers to these difficult questions require a partnership between ACE experts, physicians, and community members who reflect those who will be screened and offered interventions. Our data from parents of children with CF and adults with CF suggests that adoption of widespread screening for ACEs experienced by people with CF may be premature, that disclosure of categorical rather than individual ACEs exposure may be preferred, and that most are willing to disclose ACEs for research purposes.
Anonymous disclosure for research was most acceptable to our participants: over ¾ of parents and ⅔ of adults were willing to participate in ACEs research. There were no differences in willingness to disclose ACEs based on any demographic factor, including the length of time that a child or an adult had been treated at the CF center. While screening for ACEs may benefit people with CF, our results suggest that anonymous research on the prevalence of ACEs exposure in the CF population is an important first step. Results would better inform people with CF, their families, and their health care team about prevalence in conjunction with education about the harms of ACEs and related toxic stress.
Although the American Academy of Pediatrics has acknowledged the significant impact of ACEs and advocated for screening during childhood, there is not consensus concerning the methods – where, when, and which questionnaire.19 There is an ongoing debate about whether or not ACEs should be screened for categorically, thereby providing the respondent with anonymity to the precise nature of the ACE, or specifically, to better understand necessary treatment and further risk. Our participants preferred to disclose ACEs through a categorical screen, which does not disclose details about adverse experiences.22 While some research suggests that specific ACE combinations increase susceptibility to specific poor health outcomes, with treatment implications;23 there is also evidence that identifying ACEs from categorical screens allows beneficial interventions through fostering resiliency and addressing key social needs.24,25 A positive screen for an ACE, either categorically or specifically, can be addressed through methods including mitigating social needs through social work and referrals, bolstering resilience, addressing mental health, and advocating for mindfulness techniques.26 –29
Our findings demonstrate the feasibility of screening for ACEs, but more research is needed to further understand whether these results are representative of a large population of families whose children have CF or of adults with CF. For example, the finding that both parents of children with CF and adults with CF preferred to have ACEs screened separately from their appointment and through email may represent a bias given that the current survey was completed by email only. However, the finding may represent lack of knowledge and comfort with routine ACE screening or the wish to reduce difficult discussions during a routine visit; our data are not sufficient to fully understand this preference. Although some studies have demonstrated that parents want to have conversations about their child’s ACEs,30 there may be a more accessible and preferred method of early screening that could evolve over time to in-person discussions. This notion is supported by the parent and adult desire to learn more about ACEs from a member of their care team. Further studies are needed to expand and further explore patient preferences for ACE screening, assess the capacity for CF centers to handle a positive screen, and understand the prevalence of ACEs in the CF community.
There are several limitations of this study. The survey was a small sample size from a single center. The respondents are majority white, educated, and employed, a group that is less likely to have a high number of ACEs. Additionally, the survey was only offered by email to maintain anonymity. Further research with a larger sample size is needed. In spite of these limitations, the devastating nature of toxic stress is too extreme to ignore.31 Ongoing research suggests the benefit of screening for ACEs and intervening to reduce their negative effects.32 The results of this survey indicate that parents of children with CF and adults with CF are willing to disclose ACEs for research, prefer categorical ACE screening like that created by CYW to disclosure of specific events, and prefer not to disclose ACES during routine CF care. Furthermore, direct discussion of ACEs during routine clinical care may not be acceptable to parents of children with CF and adults with CF. Additional, separate discussions are preferred. Given the recent rapid growth in telehealth services, this may be feasible for incorporating ACEs screening in research and clinical care settings. In conclusion, anonymous research on ACEs and their effects on health and health care in people with CF is likely feasible but should be structured in a manner that is acceptable to participants.