Anonymous Research Electronic Data Capture (REDCap) Survey:
A REDCap survey was emailed to all participants from distribution lists
maintained by the adult and pediatric CF programs with address list
management to preserve anonymity of recipients. The survey included an
initial paragraph explaining ACEs, demographic information, exposure to
the age-specific screening tools, questions about preferences for
screening, and where to find more information or get assistance should
the information cause concern for a participant. A downloadable
informational document that offered more detail about health
consequences of ACEs was attached. The survey, information sheets, and
introductory email were offered in both Spanish and English and
distributed in the language of preference recorded at the CF Center, a
standard of practice for all information sent to parents and patients.
Demographic information collected included age range, race/ethnicity,
education, employment status, and length of time treated at the CF
Center. After viewing age-specific ACE screening tools, a 5-point Likert
scale was used for participants to rate willingness to discuss specific
ACEs, disclose the number of applicable ACEs in a category, and to
participate in anonymous ACE research related to health outcomes.
Participants were asked to select a preference for when they would like
to be screened for future ACEs and how they would prefer to communicate
and receive more information about ACEs. For every question,
participants were able to select “prefer not to answer” or enter free
text. The last item of the survey invited participants to share any
thoughts, comments, or suggestions. Both parent and adult participants
were instructed to contact the CF Center if they had concerns for their
child or themselves.