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Abstract #151761

Ruzan Avetisyan, MD, MPH¹, Barbara G. Bokhour, PhD², Mary Jo Pugh, PhD, RN³, Georgia Montouris, MD⁴, Dan R. Berlowitz, MD, MPH², and Lewis Kazis, DSc⁵. (1) School of Public Health, Health Policy and Management, Boston University, 715 Albany street, T3-W, Boston, MA 02118, 617-414-1437, ruzana@bu.edu, (2) Health Services/ Center for Health Quality, Outcomes & Economic Research, Boston University School of Public Health, ENRM Veterans Hospital, 200 Springs Road (152), Bedford, MA 01742, (3) South Texas Veterans Health Care System, University of Texas Health Science Center at San Antonio, 7400 Merton Minter, San Antonio, TX 78229, (4) Boston University School of Medicine, Boston Medical Center, Department of Neurology, 720 Harrison Avenue, Boston, MA 02118, (5) School of Public Health, Health Policy and Management, Boston University, Center for the Assessment of Pharmaceutical Practices (CAPP), 715 Albany street, T3-W, Boston, MA 02118

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.

Learning Objectives:

• Learn about the Quality of Life dimensions that are linked to Quality of Care of Epilepsy patients
• Develop patient-based measurements to be used in clinical settings to assess and improve care for Epilepsy patients
• Describe future implementation of HRQoL measures for interventional studies, including disease management programs

Keywords: Quality of Life, Quality of Care

Presenting author's disclosure statement:

Any relevant financial relationships? No
Any institutionally-contracted trials related to this submission?

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.