Abstracts

RATIONALE: Quality of life is increasingly being recognized by epilepsy-professionals as a construct with tremendous potential as a measure of treatment outcome, and as a model for developing and planning services. In order to have utility in outcome and evaluation research, or in service planning, quality of life must be defined in a way that is meaningful, consistent, and comprehensive. The purpose of the present study was to further explore the utility of the quality of life construct as a multi-dimensional and multi-domain concept, the utility of the construct for researchers and professionals, and its meaning among people with epilepsy. At the end of this activity, participants will be able to discuss the quality of life construct in terms of its definition, current status, and both the potential and the problems associated with its utility for researchers and professionals working with people with epilepsy.
METHODS: In the Fall of 2001, 200 37-item surveys were mailed to people on the mailing lists of Ohio and Kentucky Epilepsy Foundation chapters. The survey included questions related to the respondents[ssquote] quality of life, their definition of quality of life, and the factors that promote and detract from quality of life. Forty-six completed surveys were returned. Using open and axial coding techniques, a multi-dimensional (objective and subjective perspectives), and multi-domain structure of quality of life emerged from the data analysis.
RESULTS: Domains that were consistently identified by the participants as central to the quality of life included work and productivity, social support, physical health, religion/spirituality, autonomy/independence, leisure activities, security, mental health, and educational status. While general, rather than epilepsy-specific factors were reported to contribute to quality of life, epilepsy-specific factors related to seizures, seizure worry, and medication effects were reported to detract from quality of life. The results provide increased understanding of the quality of life construct as it is understood and experienced among adults with epilepsy.
CONCLUSIONS: To the extent that it can be shown to be meaningfully and consistently defined and understood, quality of life represents a construct with tremendous potential in epilepsy service planning and outcome research. The present study highlights this potential by demonstrating the consistency of this construct in terms of domains associated with quality of life, and the general and epilepsy-specific factors that contribute to and detract from quality of life ratings among adults with epilepsy. This broader conceptualization of quality of life than is typically used among epilepsy researchers and professionals has implications for the future use of the quality of life construct in both clinical and non-clinical settings.
[Supported by: University of Kentucky Research Foundation]