In this single-center, noninterventional, cross-sectional study, a web-based survey was administered to patients with CF (or their parents or caregivers). Participants were sampled consecutively at their regular CF care center visit at Boston Children’s Hospital. If patients met the study inclusion criteria, the investigator obtained informed consent electronically from all of the participants 18 years of age and over to participate in the study. Informed assent was obtained for all of the participants less than 18 years of age and a parent or caregiver provided informed consent electronically. The study protocol was approved and reviewed by the institutional review board of Boston Children’s Hospital.
The inclusion criteria for the study were: age ≥6 years with a diagnosis of CF, a history of P. aeruginosa lung infection, and the use of TIP during the 7 months prior to the survey. Patients aged 14 years or older self-completed the survey, whereas a parent or caregiver provided survey responses for younger patients. Eligible participants (or their parent or caregiver) completed the survey at the clinic on a tablet computer. Study data were collected and managed using Research Electronic Data Capture (REDCap) electronic data capture tools hosted at Boston Children’s Hospital.16 (link)