Pediatric CF Parent/Guardian Survey:
Among 170 patient families in the pediatric program in the summer of 2019, 157 (92%) had parent/legal guardian email addresses available. The survey was completed by 46/157 (29.3%) families. All respondents were parents of CF patients. Three surveys were excluded from analysis because of incomplete fields for the ACE screen preferences section. The largest proportion of the parent cohort were between the ages 35-44 (23, 50.0%), non-Hispanic white (34, 73.9%), had a college degree or greater (39, 84.8%), were employed (34, 73.9%), had an oldest child with CF under the age of 12 (35, 76.1%), and had been at the Pediatric CF Program for more than 5 years (25, 54.3%) (Table 1). There was no difference in the distribution of race/ethnicity for Lurie Children’s Pediatric CF Program and the survey respondents (non-Hispanic white 70.9%, p=0.075).
As displayed in Tables 2A and 2B, few parents were willing to discuss all or most specific ACEs for sections 1 and 2 (10, 21.7% and 18, 39.2% respectively). More parents were willing to disclose the number of events that would apply to their child in a specific category – section 1 (26, 56.5%) and section 2 (37, 80.4%). The majority of parents were willing to participate in anonymous health outcomes research related to their child’s ACEs score – section 1 (35, 76.1%) and section 2 (37, 80.4%). There was no difference in parental preference to participate in specific ACE screens or anonymous ACE research between Section 1 and Section 2 (p=0.38, p=0.73, respectively). Parents were more willing to participate in a categorical ACE screen of Section 2 versus Section 1 (p=0.024).
From Section 1, a stepwise increase was seen in the number willing to participate in ACE screens using specific, categorical, and anonymous research (specific vs categorical, p=0.0027; categorical vs research, p=0.018; specific vs research, p<0.00001). In section 2, more parents expressed willingness to participate in future categorical ACE screens compared to specific (p<0.00001). However, there was no difference between categorical versus research screens (p<0.48). Most parents (28, 60.9%) wanted to screen for future ACEs through an emailed survey, and most (29, 63.0%) wanted to learn more about ACEs from a member of their CF care team.