Development of health-related quality of life (HRQoL) measures to assess and improve quality of Epilepsy care

Epilepsy is a chronic disease having a significant impact on quality of life. Quality of care is an important determinant of Epilepsy patients' quality of life and general well-being. The overall purpose of this project is evaluation and improvement of delivery of care to patients living with Epilepsy. Development and testing of patient-based measurements of Quality of Life and Quality of Care to be used in clinical practice are components of this study.

Six focus groups were conducted and analyzed. We used a convenience sample of 35 adult epilepsy patients from an inner city medical center, stratified by race/ethnicity and gender. Issues discussed included: patient perceptions of Epilepsy, quality of care received, and impact of Epilepsy on patients' lives. A representative sample of adult Epilepsy patients from an inner city medical center, stratified by race/ethnicity and gender were included in the study.

We used procedures informed by grounded theory methodology to identify main dimensions and domains of Health-related Quality of Life (HRQoL) affected by Epilepsy and its treatment. Subsequent analysis differentiated the domains of HRQoL from its' determinants: a distinction that is not often recognized in previous quality of life studies. Analysis revealed patient importance given to impact of Epilepsy and its treatment on overall quality of life (HRQoL). The results demonstrate specific areas of patients' quality of life that are reflected in existing theoretical models. In addition, our study found domains that have not been recognized before, or that were only partially developed. Some of those domains are: success or failure of coping with Epilepsy; feeling of uncertainty related to treatment effectiveness and seizure control; unawareness and uncertainty about treatment side effects; feeling secure about availability of care; gender/sex specific issues, and others. Most of these domains are also related to processes and quality of care that patients received for their Epilepsy.

Focus groups also revealed that Epilepsy patients often linked their quality of life with the quality of care they received. These focus groups identified domains of HRQoL specific to Epilepsy that add clinically relevant concepts to HRQoL framework. These constructs revealed by our study provide an important avenue to assess quality of care from the perspective of the patient, and improve the delivery of Epilepsy care.

Development of comprehensive HRQoL measurements specific to Epilepsy patients, provides an important outcome measure. Such measures can be used in clinical practice, to evaluate and improve care of patients with Epilepsy.