252800 Quality of Life in Epilepsy (QOLIE): Qualitative study of patients with epilepsy in the San Francisco Bay Area

Wednesday, November 2, 2011

Kenny Chung, BA , School of Public Health, Harvard University, Boston, MA
Yuan Liu, BA , Health Research for Action, School of Public Health, University of California, Berkeley, Berkeley, CA
Susan L. Ivey, MD, MHSA , Health Research for Action, School of Public Health, University of California, Berkeley, Berkeley, CA
Debbie Huang, BA , Health Research for Action, School of Public Health, University of California, Berkeley, Berkeley, CA
Corina Chung, BA , Research, Evaluation & Data, Asian & Pacific Islander American Health Forum, San Francisco, CA
Wenting Guo, BA , Health Research for Action, School of Public Health, University of California, Berkeley, Berkeley, CA
Winston Tseng, PhD , Health Research for Action, School of Public Health, University of California, Berkeley, Berkeley, CA
Daveena Ma, MD , Department of Internal Medicine, Asian Health Services, Oakland, CA
Daniel Lowenstein, MD, MS , Department of Neurology, University of California, San Francisco, San Francisco, CA
Background/Significance: Epilepsy is a neurological condition that abruptly and unexpectedly creates numerous obstacles for people with epilepsy (PWE). Asian Americans are disproportionately affected by the condition; they are also at risk of suffering greater discrimination and misunderstanding about their condition.

Objective: We sought to better understand quality of life (QoL) in PWE by assessing challenges faced by PWE, particularly among Asian Americans residing in the San Francisco Bay Area.

Methods: We conducted eight focus groups in English and Chinese to examine QoL among 42 PWE both qualitatively and quantitatively (QOLIE-31-P instrument). Participants were categorized into three strata based on language spoken and/or support group attendance. We used AtlasTI and SAS for data analysis. This project was student-driven with faculty guidance.

Results: PWE face physical, psychosocial, and financial challenges, often losing privileges considered everyday rights by people without epilepsy while not being able to attain needed social and medical benefits. Other comorbidities and side effects of medication frequently add to their burden. Moreover, Asian-American PWE tend to have less knowledge of and access to the services and resources available to help them manage their condition, especially PWE with limited English proficiency.

Discussion: Epilepsy-related social services are useful in helping PWE deal with their condition but are frequently under-utilized due to a lack of awareness. Having both epilepsy and limited English proficiency led to a more negative self-perception and outlook on life. Future outreach efforts for PWE should focus on promoting social services and the use of support groups.

Learning Areas:
Chronic disease management and prevention
Social and behavioral sciences

Learning Objectives:
1) By the end of the session, participants will be able to discuss basic information about the challenges faced by PWE, especially ones who are Asian-American. 2) By the end of the session, participants will be able to discuss new ideas on how to integrate undergraduate student teams into research projects and facilitate student-led projects.

Keywords: Mental Health, Asian and Pacific Islander

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am qualified to present because I am the lead investigator for the project and have led two other public health research projects. I am a recent graduate of the University of California, Berkeley, who double-majored in Public Health and Molecular and Cell Biology as an undergraduate. I am currently a master's degree candidate at Harvard University's School of Public Health.
Any relevant financial relationships? No

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.

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