Abstracts

Rationale: Whether to have temporal lobe epilepsy (TLE) surgery remains a complex decision. Patient focused decision aids, containing information on risks and benefits of treatment interventions, have been shown to increase patient knowledge and facilitate shared decision making between patients and physicians. Such a tool does not exist for TLE surgery. The purpose of this study was to describe TLE patients information needs related to their decision-making process regarding TLE surgery and to identify the potential for a patient decision aid to assist in meeting these needs. Methods: A sample of TLE patients who have already had surgery was invited to participate in a focus group via a letter invitation. Patients were excluded if they had dementia, developmental delay, or other medical or neurological problem that would preclude participation in a focus group. Focus group questions included how patients gained knowledge about TLE surgery, what type of information they wanted to know, and what they would suggest for inclusion in a patient decision aid. The focus group was tape recorded, and verbalizations were thematically analyzed. Based upon the data, the authors generated ideas about the type of patient decision aid that could facilitate TLE patients epilepsy surgery decision-making process. Results: The patients (N=7) were 70% male ranging in age from 28-67. Thematic analysis revealed that the majority of the patients had not been told that epilepsy surgery was a possible intervention for them by their treating doctors. Most described their epilepsy as having severely worsened their quality of life, so on their own, they then used the Internet, read books, or attended patient-oriented information sessions to seek additional potential treatment options. Mostly through word-of-mouth from their family or friends, many then self-referred themselves to an academic referral center for a second opinion. The physicians at the academic referral center further augmented their knowledge about the risks and benefits of TLE surgery. Participants described their information needs in two broad categories: experiential and factual. For example, one participant expressed experiential information needs as: Patient s testimonials, capturing people s experience in a way that it can be personally shared with others. Patients also desired factual or quantitative benefit and risk information, but in particular, individualized to specific patients, e.g., left versus right TLE. Most patients felt that a patient decision aid that included such information could be quite helpful when delivered through the use of video clips and the Internet. Conclusions: TLE patients expressed concern regarding the limited information they received about their treatment options from their doctors. This prompted them to seek information on their own using alternative sources such as books and the Internet. They also identified types of information that TLE patients would find useful and ways in which information could be delivered in a patient decision aid, designed to facilitate the decision-making process for TLE surgery.