Adult CF Patient Survey:
Among adults with CF, 105 of 110 (95%) had a recorded email address.
The survey was completed by 36/105 (34.3%) adults with CF in the summer
of 2019. No surveys were excluded from analysis. The largest share of
the cohort were white (24, 66.7%), had a college degree or greater (23,
63.9%), were employed (17, 47.2%), and had been at the Northwestern
Medicine Adult CF Program for more than 5 years (19, 52.8%) (Table 1).
At the time of the survey, there was no difference in the distribution
of race/ethnicity for the Northwestern Medicine Adult CF Program and the
survey respondents (non-Hispanic white, 84.3%, p=0.20).
As displayed in Table 2C, few adults were willing to discuss all or most
specific ACEs (6, 16.7%), more were willing to disclose the applicable
categorical number of events (17, 47.2%), and most were willing to
participate in anonymous health outcomes research (24, 66.7%). Adults
were more willing to participate in future categorical ACE screens
compared to specific (p=0.0040). There was no difference between the
distributions of willingness to disclose ACEs in a category and to
participate in ACEs research (p=0.14). Most adults (18, 50.0%) wanted
to screen for future ACEs through an emailed survey, and most (20,
55.6%) wanted to learn more about ACEs from a member of their CF care
team.