Abstracts

Rationale: The increasing emphasis on epilepsy genetics in research and clinical arenas may lead to an increase in patients’ belief in a genetic cause of their epilepsy (“genetic attribution”). The impacts of genetic causal attribution on illness perceptions and adaptations are unclear.  We examined the relations of genetic causal attribution to medication adherence, felt stigma, and perceived lifelong epilepsy duration in a sample of adults with epilepsy. We also examined its relationship to “genetic optimism,” i.e., the belief that genetic research will lead to improvements in epilepsy care.

Methods: We surveyed 605 adults with epilepsy of unknown cause at Columbia University Irving Medical Center. A genetic attribution (GA) score was created by combining four survey items (Cronbach’s alpha=0.89, range 0-10, mean 4.6). Genetic optimism was measured by a scale based on four items (GenOp, Cronbach’s alpha=0.77, range 1-4, mean 3.3). Medication adherence was assessed by the 8-item Morisky Medication Adherence Scale (MMAS-8), felt stigma by the 10-item Epilepsy Stigma Scale (ESS), and perceived epilepsy duration by one item from the Brief Illness Perception Questionnaire (BIPQ, range 0-10 with 10 anchored to “for the rest of your life”). We divided the GA score into four quartiles (Q1, Q2, Q3, Q4), and defined our outcomes of interest as follows: low medication adherence (MMAS-8 mean score < 6), felt stigma (ESS mean score > 4), high genetic optimism (GenOp mean score > 3), and perceived lifelong epilepsy duration (BIPQ item score=10). Logistic regression analyses were used to calculate odds ratios (ORs) for each outcome of interest in relation to GA quartiles, with Q1 used as the referent. Analyses were adjusted for age, sex, education, race/ethnicity, religion, epilepsy type, and age at epilepsy onset.

Results: The odds of having high genetic optimism were increased three-fold among participants in the highest GA quartile (OR for Q4 vs. Q1: 3.2, p < 0.001). Compared to participants in GA Q1, those in Q3 and Q4 were almost twice as likely to report low medication adherence (Q3: OR=1.8, p=0.02, Q4: OR=1.8, p=0.04). The odds of having felt stigma were also increased among participants in higher GA quartiles (Q2: OR=2.6, p < 0.001, Q3: OR=2.2, p=0.02, Q4: OR=2.1, p=0.02). The odds of perceived epilepsy duration “for the rest of your life” were significantly increased for those in Q4 before adjusting for potential confounding (OR=2.1, p < 0.001), but this association was attenuated after adjustment (OR=1.7, p=0.06).

Conclusions: Our findings suggest that people who believe their epilepsy has a genetic cause are more optimistic than others about the prospects for genetic research to improve care.  Nevertheless, genetic causal attribution was associated with adverse clinical and psychological outcomes, including low adherence, felt stigma, and longer perceived epilepsy duration. These findings highlight the need for education about genetics to ameliorate misconceptions among epilepsy patients.

Funding: Supported by R01 NS104076