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.