Abstracts

Rationale: No adequate methods exist to assess outcomes that are directly customized for individual patient goals. Patients choose to undergo epilepsy surgery for both symptom reduction and to pursue specific individualized activities. It is ethically imperative that patients perspectives are central in evaluating outcomes rather than simple reliance on standard outcome metrics such as seizure freedom, medication reductions, or quality of life surveys. This recognition is in line with emerging trends of customized medicine practices. However, outcomes based on individualized goals are extremely complex due to a diversity of patient values. Studies examining patient values have provided important thematic frameworks for beginning to understanding patient goals as outcomes (Wilson et al, 1998; Taylor et al, 2001; Baca et. al., 2009). Attempts have been made to create valid instruments that capture these complex issues in a standardized checklist similar to quality of life tools (Barioni Salgado, 2008). Despite these efforts, useful knowledge about individualized metrics based on patient centered goals continues to be sparse. We sought to address limitations in the literature by conducting a prospective study examining patients goals and values.Methods: Under IRB approval, we studied 33 adult epilepsy surgery patients prior to surgery using a mixed methodology that relied on quantitative tools and qualitative social science methods. Standardized neuropsychological measures were used as well as in-depth semi-structured interviews with embedded visual analogue scales. Symptom and activity goals were probed separately. Verbatim statements were analyzed for themes using standard social science methodology (modified grounded theory).Results: As expected, driving (87%) and work/school (63%) were prominent among the patients desired activity goals whereas reduced seizures (61%) and seizure related physical effects (42%) were the most often cited symptom goals. Higher than expected expressions of improved emotional well-being or desired change in self were articulated (45%). Despite the expressed goal for increased independence, our patients rated their global sense of control on a visual analogue scale as quite high (mean= 7.4 out of maximum of 10, SD= 1.96; range= 2.2-10). A thematic tension arose between greater interdependence as well as greater independence within individual s own social goals. Most interesting were the wide array of combinations of themes reported by each participant with no obvious relationship pattern in the combinations viewed in aggregate.Conclusions: Our data provide new insights on themes of control, independence and interdependence relevant to ongoing debates regarding the proper metrics for epilepsy surgical success. There is a need to shift outcome paradigms to measure success by means of individualized preoperative patient goals that will allow a useful systematic approach and be centered on unique patient circumstances. Such a shift will lead to better informed consent and a more patient-centered practice. Funded by Greenwall Foundation