Relation of health-related quality of life and caregiver anxiety and depression in primary ciliary dyskinesia

Abstract

<b>Background:</b> Parents of children with primary ciliary dyskinesia (PCD) might be at risk of anxiety and depression. Our purpose is to investigate caregivers9 anxiety and depression levels and correlations with children9s health-related quality of life (HRQoL) and clinical status. <b>Methods:</b> 51 children (&lt;18 years) and their primary caregivers were included. Beck Depression Inventory (BDI), and State‐Trait Anxiety Inventory (STAI) scales were administered to caregivers of children with PCD. HRQoL for PCD administered to children and/or caregivers and adolescents. <b>Results:</b> Fifty-one children with PCD (32 male and 19 female) and their primary caregivers were enrolled in the study. The median age of the children was 11.5 years (range, 4-18). The median BDI for parents was 8 ranging from 0 to 36. According to the BDI, eighteen (36%) of caregivers reported depression. The median STAI score of parents was 48 (37-67). Elevated levels of anxiety in STAI (scores ⩾45) were detected in 36 (70.6%) of caregivers. Anxiety and depression were not significantly associated with children’s (6-12 years) HRQoL-PCD. A negative relationship was demonstrated between parent depression and treatment burden (HRQoL-PCD) of the adolescents. Parent anxiety was negatively associated with the upper respiratory symptoms domain in HRQoL-PCD of the adolescents. <b>Conclusion:</b> Present study demonstrated elevated levels of anxiety and depression in caregivers of patients with PCD. Also demonstrated the association of HRQoL-PCD in adolescents and parent anxiety and depression. Our findings support the importance of mental health screening and psychological support for parents.