Anxiety and depression in Dutch patients with primary ciliary dyskinesia and their caregivers: associations with health-related quality of life

BACKGROUND: Primary ciliary dyskinesia (PCD) might be a risk factor for the development of anxiety and depression. This study investigated the associations between anxiety, depression and health-related quality of life (HRQoL) in individuals with PCD and their caregivers. METHODS: Children, adolescents and adults with PCD and their caregivers were invited to participate in a mental health screening programme. During regular yearly outpatient visits, measures of anxiety (GAD-7), depression (PHQ-9), HRQoL (QOL-PCD), lung function (forced expiratory volume in 1 s (FEV(1))) and body mass index (BMI)) were collected and associations of anxiety, depression and HRQoL were estimated. RESULTS: A total of 103 individuals participated in the mental health screening programme. Elevated levels of anxiety (scores ≥10 on GAD-7) were found in 6% of adults (n=33), 14% of children (n=7), 6% of adolescents (n=17) and 20% of caregivers (n=46, 52% of mothers). Elevated depression levels (scores ≥10 on PHQ-9) were found in 18% of adults, 14% of children, 6% of adolescents and 11% of caregivers. Anxiety and depression were associated with scales on the QOL-PCD. Mothers reported higher anxiety scores than fathers (30% versus 9%, p=0.03). A strong negative relationship was found between depression in caregivers and physical functioning (QOL-PCD) of the child. Anxiety and depression were not significantly associated with anxiety/depression in their child. CONCLUSION: This is the first study investigating anxiety and depression in individuals with PCD and their caregivers. Our results revealed elevated levels of anxiety and depression, which were associated with worse HRQoL. These results suggest the need for psychological support in PCD.