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.