Illness perceptions determine psychological distress and quality of life in youngsters with epilepsy

- Self-regulation concepts were investigated in youth with epilepsy.
- Illness perceptions predicted distress and quality of life.
- Autonomous treatment regulation did not predict distress and quality of life.
- Perceived autonomy support by parents did not predict distress and quality of life.

The aim of this cross-sectional study was to explore the extent to which gender, epilepsy severity, and self-regulation concepts (illness perceptions, autonomous treatment regulation, perceived autonomy support by parents) predict psychological distress and quality of life (QoL) in young patients with epilepsy. Structured interviews were conducted in 100 patients (Mage = 13.9, SD = 2.21, 41% girls), and data were analyzed by means of multiple hierarchical regression analyses. Seizures of most patients (91%) were well controlled by antiepileptics, 3% of the patients had infrequent seizures, and seizures in 6% were pharmacoresistant. At a multivariate level, it appeared that youngsters with epilepsy who expect that their disease will last for a long time, who believe that they have less personal control over their illness, and who expect the illness to have a high emotional impact reported higher levels of distress. In addition, a better QoL was reported by youngsters who believed that treatment did not control their illness and who thought that their epilepsy would not affect them emotionally. Findings indicate the importance of illness perceptions, and it is suggested that they should be targeted in future interventions in youngsters with epilepsy.