Siqueira Nathália F, Oliveira Fernando L B B, Siqueira Jorge A, de Souza Elisabete Abib Pedroso
Neurology Department, State University of Campinas, Campinas, São Paulo, Brazil.
PLoS One. 2014 Sep 5;9(9):e106879. doi: 10.1371/journal.pone.0106879. eCollection 2014.
Our objectives were: to assess the QOL of Brazilian adolescents with epilepsy with a specific QOL assessment tool; to compare the adolescents with epilepsy and healthy adolescents using a generic QOL assessment tool; to correlate the 2 different QOL assessment tools (the generic and the epilepsy-specific); and to correlate QOL scores of the adolescents with epilepsy obtained by both tools with physical, psychological and social variables of the disease.
Fifty subjects (case group) attending the outpatient clinic of epilepsy of the Clinics Hospital of UNICAMP, Campinas-SP, answered the Brazilian version of the QOL inventory for adolescents with epilepsy--QOLIE-AD-48 and the QOL Questionnaire--WHOQOL-BREF-Portuguese version. Fifty-one subjects (control group) from public schools in Campinas-SP answered only the WHOQOL-BREF.
The results showed that adolescents with epilepsy presented a good score of QOL in both tools; overall scores for both groups with WHOQOL-BREF were good, but a statistically significant difference was seen with regards to the Psychological domain of the WHOQOL-BREF favoring the control group. Significant correlations between QOLIE-AD-48 Total and WHOQOL domains were found. Adolescents that were considered seizure-free (P = 0.001), had good perception of seizure control (P = 0.012) and had not had occurrence of seizures in public places (P = 0.001) presented better QOL scores.
Brazilian adolescents with epilepsy may present good QOL scores when they themselves consider the disease as under control; physical, social and especially psychological variables associated to the disease may play an important role in these results. As a generic QOL tool, WHOQOL-BREF was sufficient to allow for a comparison between chronic disease bearers and healthy adolescents and showed that the gap in QOL between both populations is not as extensive as once was thought, probably due to better support and adaptation to the disease.
我们的目标是：使用特定的生活质量评估工具评估巴西癫痫青少年的生活质量；使用通用生活质量评估工具比较癫痫青少年和健康青少年；关联两种不同的生活质量评估工具（通用工具和癫痫特定工具）；并将两种工具获得的癫痫青少年生活质量得分与该疾病的身体、心理和社会变量相关联。
50名受试者（病例组）在坎皮纳斯-圣保罗州UNICAMP临床医院癫痫门诊就诊，回答了巴西版癫痫青少年生活质量量表——QOLIE-AD-48和生活质量问卷——WHOQOL-BREF葡萄牙语版。51名来自坎皮纳斯-圣保罗州公立学校的受试者（对照组）仅回答了WHOQOL-BREF。
结果显示，癫痫青少年在两种工具中生活质量得分均良好；两组使用WHOQOL-BREF的总体得分均良好，但在WHOQOL-BREF的心理领域存在统计学显著差异，对照组得分更高。发现QOLIE-AD-48总分与WHOQOL各领域之间存在显著相关性。被认为无癫痫发作（P = 0.001）、对癫痫控制感知良好（P = 0.012）且未在公共场所发生癫痫发作（P = 0.001）的青少年生活质量得分更高。
当巴西癫痫青少年自身认为疾病得到控制时，他们可能具有良好的生活质量得分；与该疾病相关的身体、社会尤其是心理变量可能在这些结果中起重要作用。作为一种通用生活质量工具，WHOQOL-BREF足以对慢性病患者和健康青少年进行比较，并表明这两类人群在生活质量上的差距并不像曾经认为的那么大，这可能是由于对疾病有了更好的支持和适应。
