Perceptions of illness severity in adults with drug-resistant temporal lobe epilepsy

Objective The purpose of this study was to explore how subjective perceptions of illness severity were described by a sample of participants with drug-resistant epilepsy (DRE) who were considering surgery. Methods A qualitative methodology, constructivist grounded theory, guided all aspects of the study. Data were collected via 51 semi-structured interviews with 35 adults in our multiethnic sample. At interview, the 20 women (57%) and 15 men (43%) ranged in age from 18 to 68 years (mean = 35.6 years) and had lived with epilepsy for an average of 15.4 y (range = 2–44 years). Results A grounded theory with four interrelated categories was developed to reflect the process by which participants arrived at an explanation of illness severity. Illness severity for participants evolved as participants reflected upon the burdensome impact of uncontrolled seizures on self and others. Epilepsy, when compared with other chronic conditions, was described as less serious, and participants imagined that other peoples' seizures were comparatively worse than their own. Illness severity was not uppermost in participants' minds but emerged as a concept that was both relative and linked to social burden. Perceptions of overall disease severity expanded upon determinants of seizure severity to offer a more complete explanation of what patients themselves did about longstanding, uncontrolled epilepsy. Conclusions Perceptions of illness severity played a vital role in treatment decision-making with the potential to impact the illness trajectory. How to measure components of illness severity represents a new challenge for outcomes research in DRE.