The study, “Health-related quality of life and psychological wellbeing are poor in children with bronchiectasis and their parents,” was published in the journal ERJ Open Research.
Patients with bronchiectasis often experience a considerable disease burden, including recurrent hospitalizations and lower health-related quality of life (HRQoL). Moreover, families with children with chronic illnesses, such as bronchiectasis, are more likely to experience poor psychological health.
“Examining the impact of a childhood illness on the psychological well-being of family members, particularly the primary caregiver, is important as maternal depression may influence non-adherence to therapy and overall morbidity,” the researchers wrote.
Currently, there is little information on child and parent perceptions of HRQoL or on the psychological well-being of parents of children with clinically stable bronchiectasis, compared with parents of healthy children.
Therefore, a group of Australian researchers set out to determine the self-reported and parent-proxy HRQoL in children with bronchiectasis, compared with age-matched participants. Researchers also assessed the psychological well-being of parents or caregivers.
Children between the ages of 5 and 18 with bronchiectasis were recruited from clinics at two hospitals in Australia. Age-matched children without a diagnosis of a respiratory condition were analyzed as controls.
Children and their parents completed an age-appropriate version of the Pediatric Quality of Life Inventory (PedsQL), which is a generic HRQoL scale that evaluates physical and psychosocial health. Parents also completed two measures of psychological health, the Hospital Anxiety and Depression Scale (HADS) and the Center for Epidemiologic Studies Depression Scale (CES-D).
Parents also filled out a QoL questionnaire called pediatric chronic cough (PC-QoL), which is designed to assess how much and how often they are worried or concerned about their child’s cough.
In total, 41 children with bronchiectasis (mean age of 10 years) along with 41 parents, and an equal number of control children and their parents, were included in this study.
Results showed that, as expected, children with bronchiectasis had significantly worse self-reported and parent-perceived HRQoL than the control group.
In bronchiectasis children, there was a fair-to-moderate correlation between parent-proxy and their children’s PedsQL physical, psychosocial, and total scores. Additionally, a correlation was found between disease severity and Parent PedsQL physical score.
Such a significant association between parent and child reports of HRQoL suggests that, in the absence of a validated disease-specific measure for children, self-reported or parent-proxy measures of HRQoL can be used.
Researchers also found that almost three times as many parents of bronchiectasis children (49%) reported symptoms of anxiety than parents of healthy children (17%). Furthermore, according to the CES-D, 56% of parents of children with bronchiectasis have symptoms of depression, compared with 2% of parents with healthy children.
Parents of children with bronchiectasis with worse HRQoL tended to have poorer psychological health. Similarly, poorer PC-QoL results were significantly associated with anxiety and depression according to the CES-D, but not on the HADS scale.
One explanation for the poorer psychological health in parents “may be related to the high treatment burden of their children, with nearly 75% of child participants with bronchiectasis in this study engaged in regular airway clearance therapy and exercise,” the researchers wrote.
Overall, the results showed that “in comparison with their healthy peers, children with bronchiectasis have poor HRQoL, and their parents report higher levels of anxiety and depression,” they wrote.
According to the team, the results highlight “the importance of a ‘whole-of-family’ approach to screening and management for bronchiectasis, including current recommendations for psychosocial interventions for families of children with bronchiectasis.”