Background: People with CF (pwCF) frequently have gastrointestinal symptoms (GI), including abdominal pain and irregular bowel movements. These are often embarrassing, difficult to report, and frequently missed. Thus, a GI Symptom Tracker was created and validated in the US and translated and validated in Dutch. This questionnaire consists of four subscales: Eating Challenges, Stools, Adherence Challenges and Abdominal Symptoms. Aim of this study was to investigate the relationship between GI symptoms, anxiety/depression and health-related quality of life (HRQoL) in Dutch pwCF. Methods: In this prospective, cross-sectional single-center pilot study, pwCF completed the Dutch GI Symptom Tracker, GAD-7 (anxiety), PHQ-9 (depression), and CFQ-R (HRQoL) from Sept 2021-June 2022. Regression analyses were used to analyze the univariable associations between GI symptoms, anxiety/depression and HRQoL. Results: 51 pwCF were enrolled consecutively ( n= 41 adults, 66% female, mean age (y) [range]= 32.7 [19-71] & n=10 adolescents, 70% female, mean age (y) [range]= 14.2 [12-17]). Elevated levels of anxiety (scores ≥10 on GAD-7) were found in 17% of adults and 0% of adolescents. Elevated depression scores ( ≥10 on PHQ-9) were found in 9% of adults and 20% of adolescents. GI scales ‘Eating Challenges’ and ‘Stools’ were significantly, positively associated with elevated symptoms of anxiety and depression. Most GI scales were associated with lower HRQoL. Conclusion: This is the first study investigating the link between GI symptoms assessed by the Dutch GI Symptom Tracker and anxiety/depression and HRQoL in Dutch pwCF. More GI symptoms were associated with higher anxiety and depression scores and worse health-related quality of life. Additional research is needed to better understand how mental and physical health are linked in CF.

Background: eHealth CF-CBT is the first digital mental health intervention for depression/anxiety in adults with cystic fibrosis (awCF); an 8-session therapist-guided internet-delivered program that was developed in English and Dutch with stakeholder input and evaluation indicating high acceptability and usability. Methods: Dutch eHealth CF-CBT was piloted in awCF with mild-moderate symptoms of depression and/or anxiety. Feasibility, usability, acceptability, and preliminary efficacy were assessed, measuring pre-post changes in depression (PHQ-9), anxiety (GAD-7), perceived stress (PSS) and health-related quality of life (CFQ-R). Results: All participants (n=10, 7 female, mean age 29 (range 21-43), mean FEV1 71%pred (range 31-115)) completed all sessions. Patient-rated feasibility, usability and acceptability of eHealth CF-CBT was positive on validated scales, as were qualitative assessments of content and format. GAD-7 improved in 90% of participants; in 50% by ≥ the minimally important difference (MID) of 4 points. PHQ-9 improved in 90%; 40% by ≥ the MID of 5. PSS improved in 80%. CFQ-R improved in the domain Health Perceptions (70%). Conclusions: eHealth CF-CBT demonstrated feasibility, usability, acceptability and promising preliminary efficacy in this pilot trial with Dutch awCF with mild to moderate symptoms of depression and anxiety.

Background. The COVID-19 pandemic has spread across the world, leading to government measures associated with a negative impact on mental health. The aim of this study was to evaluate the impact of COVID-19 on depression, anxiety and resilience in Dutch people with cystic fibrosis (PwCF) or primary ciliary dyskinesia (PwPCD) and their caregivers during the pandemic. Methods. Adolescents (12-17 years), adults and caregivers of children (0-17 years) with CF or PCD completed questionnaires on depression (PHQ-9), anxiety (GAD-7) and resilience (BRS) between September 2020 and February 2021. The psychosocial impact of COVID-19 was measured by the Exposure and Family Impact Survey (CEFIS) Part 2. Mixed model analyses compared PHQ-9 and GAD-7 results to participants’ pre-pandemic scores. Results. 110 participants (10 PwCF, 31 PwPCD, 52 CF caregivers, 17 PCD caregivers) completed questionnaires during the pandemic. Pre-pandemic outcomes were available for 87 participants. The prevalence of symptoms of depression and anxiety (PHQ-9 or GAD-7 scores ≥5) in PwCF and PwPCD and their caregivers before and during the pandemic was high, with an increase in depression in PwCF (2.75; 95%-CI: 0.82 to 4.68) and increase in anxiety in CF caregivers (1.03; 0.09 to 1.96) during the pandemic. Resilience was within the normal range for all groups, CEFIS scores corresponded to a low to normal impact. Conclusion. PwCF and PwPCD and their caregivers were at high risk of increased depression and anxiety symptoms both before and during the pandemic, which emphasizes the importance of mental health screening and psychological care in CF and PCD.