Health Research for Action, University of California, Berkeley, Berkeley, CA, USA.
Epilepsy Behav. 2012 Jun;24(2):256-63. doi: 10.1016/j.yebeh.2012.02.003. Epub 2012 Apr 21.
This study evaluated quality of life (QOL) in people with epilepsy (PWE) in the San Francisco Bay Area.
This was a qualitative study examining QOL through the use of focus groups and of the QOLIE-31-P survey instrument. Six focus groups were conducted to examine self-reported challenges due to epilepsy. Focus groups were conducted for individuals who did and did not attend support groups.
Individuals with epilepsy reported substantial difficulties with finances, physical and psychosocial functioning. Also, limited knowledge about services and relatively negative feelings toward self were common among newly diagnosed participants.
Many of the issues surrounding QOL and challenges were shared across groups. Epilepsy-related social services appeared to be useful in helping PWE cope and in increasing PWE's awareness of key enabling services. Although many individuals with epilepsy reported poor QOL and other challenges, epilepsy-related services may be under-utilized due to a lack of awareness.
本研究评估了旧金山湾区癫痫患者（PWE）的生活质量（QOL）。
这是一项通过焦点小组和 QOLIE-31-P 调查工具来评估 QOL 的定性研究。进行了六组焦点小组，以检查由于癫痫而导致的自我报告的挑战。焦点小组针对参加和不参加支持小组的个人进行。
癫痫患者报告在财务、身体和心理社会功能方面存在很大困难。此外，新诊断参与者普遍对服务了解有限，对自己的评价相对负面。
许多与 QOL 和挑战相关的问题在各个小组中都有共同之处。癫痫相关的社会服务似乎有助于 PWE 应对，并提高 PWE 对关键使能服务的认识。尽管许多癫痫患者报告生活质量差和其他挑战，但由于缺乏认识，癫痫相关服务可能未得到充分利用。
