Participants and procedure
All adolescents (12-17 y) and adults (aged ≥ 18 y) with CF
visiting the outpatient clinic at the Amsterdam University Medical
Centers (Amsterdam UMC) between Sept 2021 and June 2022, were
consecutively invited to participate in this prospective,
cross-sectional observational study. All participants provided written,
informed consent.
Exclusion criteria included: unable to read or poor command of the Dutch
language, established diagnosis of a non-functional gastro-intestinal
disease, such as inflammatory bowel disease, celiac disease, history of
bowel surgery, and severe psychiatric dysfunction, including acute
safety risk to self or others. Patients reporting suicidality on
question 9 on the Patient Health Questionnaire (PHQ-9), were assessed
further. Those reporting suicidal intent were excluded from this study
and referred to their care provider.
All participants received either online questionnaires (see section
‘Measures’) through the clinical data management
platform25 or paper questionnaires through a member of
their CF‐multidisciplinary care team (pediatric psychologist, dietician,
specialized nurse, or pediatrician).