Health-related quality of life and emotional well-being in parents of children with epilepsy referred for presurgical evaluation in Sweden.

PURPOSE

The purpose of this study was to assess and compare health-related quality of life (HRQoL) and emotional well-being in mothers and fathers of children with drug-resistant epilepsy, referred for presurgical evaluation in Sweden.

METHODS

Mothers (n=117) and fathers (n=102) of 122 children (0-18 years) completed the generic 36-item Short Form Health Survey (SF-36) and the Hospital Anxiety and Depression Scale (HADS). Mothers' and fathers' SF-36 scores were compared with age-adjusted Swedish population values using the independent t-tests. Differences in the proportions of mothers vs. fathers classified as 'noncases' or 'possible/probable' clinical cases of anxiety (HADS-A) and depression (HADS-D), respectively, were assessed with the chi-square test. Parents' HADS scores were also compared using independent t-tests.

RESULTS

Mothers had significantly lower scores compared with norms on 6 of the 8 SF-36 domains (p<0.01), while fathers had significantly lower scores on 4 of the domains (p<0.01). Mothers had significantly lower scores than fathers on 4 of the SF-36 domains (p<0.05). Significantly more mothers than fathers scored below the population mean for the SF-36 Mental Component Summary score. A significantly larger proportion of mothers than fathers had 'possible/probable' anxiety (52% vs. 38%) but not depression (30% vs. 22%). Mothers had significantly worse scores than fathers on HADS-A (p<0.01) but not on HADS-D.

CONCLUSION

Mothers and fathers of children with drug-resistant epilepsy have diminished HRQoL compared with population norms. Symptoms of anxiety appear to be more common than symptoms of depression. Mothers experienced higher levels of anxiety, but not depression, than fathers and scored lower than fathers on vitality, mental health, and Mental Component Summary of the SF-36. There is a need to identify contributory factors and interventions to ameliorate these difficulties.