Unique impacts of epilepsy on women's quality of life: A qualitative investigation

Background: Epilepsy is a common and chronic neurologic condition characterized by the unpredictable occurrence of seizures. Current treatment approaches do not adequately take into account the unique impact epilepsy has on women's health-related quality of life (HRQOL).

Purpose: To explore how epilepsy impacts women's HRQOL throughout their life course.

Methods: In-depth telephone interviews were conducted with 30 women with epilepsy. Interviews were recorded, transcribed verbatim, and coded in ATLAS.ti.

Results: The majority of women described epilepsy diagnosis as a traumatic event that ushered in unwelcome life changes. However, most women said that over time they accepted the diagnosis and adjusted to living with recurring seizures. At the same time, women reported that there were several times throughout their life course in which they reinterpreted what it meant to live with epilepsy and felt the disorder was largely detrimental to their quality of life. These times included adolescence, the transition from living with their family to living independently, the initiation of dating or sexual activity, and early reproductive years when women were considering motherhood. During these times, women reported feeling notably different than their peers whereas at other points in their lives they did not often feel impaired by their epilepsy. Emotional support from other women with epilepsy, family, friends, and romantic partners, as well as positive relationships with healthcare providers helped women negotiate feelings of difference.

Conclusion: To improve the HRQOL of women with epilepsy, interventions must consider that epilepsy affects HRQOL differently at various times throughout the life course.