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epilepsy, quality of life, tool development, validity



  1. Miller, Wendy R. PhD, RN, CCRN
  2. Bakas, Tamilyn PhD, RN, FAHA, FAAN
  3. Weaver, Michael T. PhD, RN, FAAN
  4. Buelow, Janice M. PhD, RN, FAAN
  5. Sabau, Dragos MD


Purpose/Objectives: Epilepsy is the most common chronic neurological disease in the United States. Adults with epilepsy suffer downturns in quality of life. The development of self-management interventions aimed at improving the quality of life of adults with epilepsy is hindered by the lack of a sensitive, patient-centered outcome measure. The purpose of this study was to develop the Life Changes in Epilepsy Scale (LCES); a second purpose was to establish evidence of the content and face validity of the LCES.


Methods: The LCES was developed based on existing qualitative data and a theoretical framework derived from the literature; items were developed to measure perceived changes in the areas of social functioning, somatic health, and subjective well-being since epilepsy onset. Content validity indices were calculated based on evaluation of the scale by 3 experts in the field of epilepsy, whereas face validity was evaluated by 5 adults with epilepsy who were recruited from a Midwestern epilepsy clinic; qualitative data regarding the appropriateness of outcomes included in the LCES were also collected.


Results: The initial version of the LCES included 41 items. Following review of the LCES by experts in which both scale- and item-content validity indices of 1.0 were achieved, the number of items was reduced to 35. All 35 items were maintained following review of the LCES by adults with epilepsy. Qualitative comments from participants supported the inclusion of outcomes measured by the LCES.


Conclusions/Implications: Results of this study provide evidence of both content and face validity of the LCES. Further psychometric testing of the scale is ongoing. In addition to being used as an outcome measure in intervention studies, the psychometrically tested LCES can serve as a valuable tool for advanced practice nurses caring for adults with epilepsy in inpatient, outpatient, and community settings. The LCES can allow for a brief assessment of ways in which patients' lives have been affected by epilepsy, thus allowing nurses to develop targeted nursing interventions for these patients.