Illness identity in young adults with refractory epilepsy

Area of Science:

• Psychology
• Neurology
• Health Sciences

Background:

• Refractory epilepsy presents significant challenges to daily functioning in young adults.
• Understanding how patients integrate their epilepsy into their identity is crucial for their well-being.

Purpose of the Study:

• To examine the integration of refractory epilepsy into patient identity.
• To investigate the relationship between illness identity and health-related quality of life (HRQOL).

Main Methods:

• 121 adults (18-40 years) with refractory epilepsy completed questionnaires on illness identity, HRQOL, and seizure severity.
• Illness identity states (acceptance, enrichment, engulfment, rejection) were assessed using the Illness Identity Questionnaire (IIQ).
• Hierarchical regression analyses predicted HRQOL from illness identity, controlling for demographic and clinical factors.

Main Results:

• Patients with refractory epilepsy reported higher illness rejection and engulfment, and lower acceptance compared to those with non-neurological chronic diseases.
• Seizure severity and medication side-effects correlated with higher engulfment and lower acceptance.
• Illness identity, particularly engulfment, significantly predicted lower HRQOL, even after controlling for other variables.

Conclusions:

• The integration of epilepsy into a patient's identity critically affects their HRQOL.
• Clinicians should monitor for signs of patients feeling engulfed by their epilepsy to provide targeted support.