Attitude of epilepsy patients and their attendants for participating in research on status epilepticus

摘要

To evaluate the reason joining in status epilepticus (SE) trial by epilepsy patients and attendants and their preferences for types of trials and consent. The participants were interviewed after giving a SE case summary. Their demographic details, reason of consenting or non-consenting and preference of trials and type of consent were noted. The responses of the patients and attendants were compared. 77 subjects participated and 47 (61 %) were willing to participate in the trial mainly due to self-interest (treatment by specialist, best treatment and treatment availability only by trial). The reasons for unwilling were apprehension and lack of will. The participants preferred a head-to-head trial over a placebo-controlled (21 vs. 3), proxy consent rather than waived consent (16 vs. 6) and preconsent (16 vs. 3). These responses were not different between patients and attendants. 61 % subjects were willing to participate in SE trial especially in head-to-head trial with proxy consent.