Genetic attribution and perceived impact of epilepsy in multiplex epilepsy families

Genetic attribution and perceived impact of epilepsy in multiplex epilepsy families
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DOI:
10.1111/epi.16352
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发表时间:
2019-10-06
期刊:
影响因子:
5.6
通讯作者:
Ottman, Ruth
Ottman, Ruth
中科院分区:
医学1区
文献类型:
--
作者:
Garofalo, Diana C.;Sorge, Shawn T.;Ottman, Ruth

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研究发现,认为其疾病原因是遗传的受影响个体可能会以各种方式作出反应,包括对改善治疗的乐观态度和由于感知到病情的持久性而感到悲观。这项研究评估了癫痫患者遗传归因的心理社会影响。方法对165例多发性癫痫患者进行自填式问卷调查。癫痫的心理社会影响进行了评估与癫痫量表的影响,包含项目的关系,就业,整体健康,自尊和生活水平。遗传归因使用来自三个项目的量表进行评估,这些项目询问遗传学在家庭中引起癫痫的作用,癫痫相关突变的可能性以及遗传学对引起参与者癫痫的影响。我们使用Poisson回归估计了癫痫对中位数以上的影响的患病率(PR),并采用稳健的标准误,调整了终身癫痫发作次数和自上次癫痫发作以来的时间。结果参与者的平均年龄为51岁; 87%为非西班牙裔白色人,63%为女性,54%为大学毕业生。遗传归因量表与癫痫的高影响显著相关(调整后的PR = 1.4,95%置信区间= 1.07-1.91,P = .02)。三个遗传归因问题中的一个也与癫痫的高影响显著相关(相信遗传学在家族中引起癫痫方面发挥了重要作用,调整后的PR = 1.8)。这些发现反映了癫痫的心理社会影响与癫痫具有遗传原因的信念之间的关联,在包含多个受影响个体的家庭中的癫痫患者中。这种关联可能是因为相信遗传原因导致心理社会影响增加,或者因为癫痫的心理社会影响更大,导致一些人相信他们的癫痫是遗传的。
Objective Studies have found that affected individuals who believe the cause of their disorder is genetic may react in various ways, including optimism for improved treatments and pessimism due to perceived permanence of the condition. This study assessed the psychosocial impact of genetic attribution among people with epilepsy. Methods Study participants were 165 persons with epilepsy from multiplex epilepsy families who completed a self-administered survey. Psychosocial impact of epilepsy was assessed with the Impact of Epilepsy Scale, containing items about relationships, employment, overall health, self-esteem, and standard of living. Genetic attribution was assessed using a scale derived from three items asking about the role of genetics in causing epilepsy in the family, the chance of having an epilepsy-related mutation, and the influence of genetics in causing the participant's epilepsy. We estimated prevalence ratios (PRs) for impact of epilepsy above the median using Poisson regression with robust standard errors, adjusting for number of lifetime seizures and time since last seizure. Results Participants' age averaged 51 years; 87% were non-Hispanic white, 63% were women, and 54% were college graduates. The genetic attribution scale was significantly associated with having a high impact of epilepsy (adjusted PR = 1.4, 95% confidence interval = 1.07-1.91, P = .02). One of the three genetic attribution questions was also significantly associated with a high impact of epilepsy (belief that genetics had a big role in causing epilepsy in the family, adjusted PR = 1.8). Significance These findings reflect an association between the psychosocial impact of epilepsy and the belief that epilepsy has a genetic cause, among people with epilepsy in families containing multiple affected individuals. This association could arise either because belief in a genetic cause leads to increased psychosocial impacts, or because a greater psychosocial impact of epilepsy leads some to believe their epilepsy is genetic.