Health-related quality of life, depression, anxiety, and sleep in mothers and fathers of children with dravet syndrome in Sweden

Purpose

To evaluate health-related quality of life (HRQoL), depression, anxiety and sleep in caregivers (mothers and fathers) of children with Dravet Syndrome (DS).

Methods

Mothers (n = 41) and fathers (n = 39) of 42 children with DS completed the Rand 36-Item Short Form Health Survey (SF-36), the Hospital Anxiety and Depression Scale (HADS), and the Insomnia Severity Index (ISI). Mothers’ and fathers’ SF-36 scores were compared with Swedish population values for males and females using t-tests. Differences in proportions of mothers vs. fathers classified as ‘noncases’ or ‘possible/probable’ cases of anxiety (HADS-A) and depression (HADS-D), respectively, were assessed with the chi-square test. Parents’ SF-36, HADS symptom and ISI scores were compared using t-tests. Linear regression analysis was employed to explore factors associated with sleep and mental health.

Results

Mothers had significantly lower scores compared with population norms on seven of eight SF-36 domains whilst fathers had lower scores on five domains. Mothers had significantly lower scores than fathers on one (i.e. Role limitation − emotional) SF-36 domain. A larger proportion of mothers than fathers had ‘possible/probable’ anxiety (83 % vs 59 %; p = 0.018), but not depression (46 % vs. 46 %; p = 0.987). Mothers reported more symptoms of anxiety than fathers (p = 0.007) but there was no difference in depression (p = 0.399). Mothers (78 %) reported more sleep difficulties than fathers (67 %) but the difference was not significant (p = 0.254). Sleep difficulties were predicted by mental health difficulties and vice versa, in mothers and fathers (all p < 0.001). Increased child sleep difficulties were associated with increased maternal sleep difficulties (p = 0.003) but not paternal sleep difficulties.

Conclusion

Parents of children with DS have high levels of mental health and sleep difficulties and reduced HRQoL. Mothers experienced higher levels of anxiety, but not depression, than fathers. There is a need to screen parents of children for these difficulties and develop interventions to ameliorate the difficulties.