Department of Neurology, Erasmus Medical Center, Rotterdam, The Netherlands.
Epilepsia. 2011 Dec;52(12):2192-202. doi: 10.1111/j.1528-1167.2011.03294.x. Epub 2011 Oct 17.
Epilepsy may have far-reaching consequences for patients, other than having seizures and medication. At 15 years after diagnosis, this study investigates health perception, restrictions due to epilepsy, living arrangements (including marital status and offspring), and the educational and occupational attainment of patients with childhood-onset epilepsy.
A total of 453 patients with epilepsy had a 5-year follow-up since diagnosis with regular visits and data collection. Ten years later, a questionnaire addressing epilepsy was completed by 413 patients, resulting in a mean follow-up of 15 years. Subjects were compared with age peers of the Dutch population for each etiologic group separately, and also for subjects with/without a 5-year terminal remission regardless of treatment. Age-adjusted standardized incidence rates were calculated for each variable.
Subjects with normal intelligence had a health perception comparable with that of the general population, but significantly more subjects without remission had a worse health perception, especially those still using medication. Restrictions and symptoms due to epilepsy were reported by 14% of the subjects, mainly by those without remission or with ongoing medication. The living arrangement of subjects with idiopathic or cryptogenic etiology was similar to that of Dutch persons of the same age (age peers). Subjects with remote symptomatic etiology less often lived independently or with a partner, and more frequently resided in an institution or living group for the disabled. Those with and without remission were more often part of another household, mainly due (in both groups) to having a remote symptomatic etiology. Rates of having a partner and offspring were significantly reduced only for subjects with remote symptomatic etiology. Fewer students with idiopathic/remote symptomatic etiology and students in remission followed higher vocational or scientific education. In these latter groups, the highest attained education of employees was lower than expected. The employment status of subjects with idiopathic or cryptogenic etiology was comparable with that of their Dutch age peers, but fewer subjects with remote symptomatic etiology were employed and more of them were part of the dependent population. However, for those in the labor force (employed/unemployed) all employment rates were ≥90%, even for those with remote symptomatic etiology. Nevertheless, fewer employees than expected had a higher vocational or scientific level of occupation, even those with idiopathic etiology and those in remission.
Health perception, living arrangement, and socioeconomic status were influenced by epilepsy, comorbidities, or treatment, particularly for subjects with remote symptomatic etiology or no remission. The group in remission fared less well than expected, mainly due to the numbers of subjects with remote symptomatic etiology in this group. In line with others, we conclude that childhood-onset epilepsy is associated with lower educational attainment, even for subjects with idiopathic etiology and subjects in remission; probably related to this, their occupational level was also lower than expected.
癫痫除了癫痫发作和药物治疗外，可能对患者产生深远的影响。本研究在诊断后 15 年，调查了儿童期起病的癫痫患者的健康感知、癫痫相关限制、生活安排（包括婚姻状况和子女）以及教育和职业成就。
共有 453 例癫痫患者在诊断后进行了 5 年的随访，定期就诊并收集数据。10 年后，413 例患者完成了一份针对癫痫的问卷，平均随访时间为 15 年。分别对每个病因组的患者与荷兰同龄人群进行比较，以及无论治疗是否有 5 年的终点缓解，对有/无缓解的患者进行比较。计算了每个变量的年龄调整标准化发病率。
智力正常的患者健康感知与一般人群相当，但无缓解组的患者健康感知明显较差，尤其是仍在用药的患者。14%的患者报告了癫痫相关的限制和症状，主要是无缓解或持续用药的患者。特发性或隐源性病因的患者的生活安排与荷兰同龄人的生活安排相似（同龄人群）。有远程症状性病因的患者独立生活或与伴侣生活的比例较低，更多地居住在机构或残疾人群生活组。有缓解和无缓解的患者更多地属于另一个家庭，主要是由于（在两组中）有远程症状性病因。仅有远程症状性病因的患者的伴侣和子女比例显著降低。特发性/远程症状性病因的学生和缓解期的学生接受高等职业或科学教育的比例较低。在这些组中，员工的最高受教育程度低于预期。特发性或隐源性病因的患者的就业状况与荷兰同龄人的就业状况相当，但远程症状性病因的患者就业人数较少，更多的患者属于依赖人群。然而，对于那些在劳动力中（就业/失业）的人来说，所有的就业率都≥90%，即使是有远程症状性病因的患者。尽管如此，与预期相比，仍有较少的员工具有较高的职业或科学水平，即使是特发性病因和缓解期的患者也是如此。
健康感知、生活安排和社会经济地位受到癫痫、合并症或治疗的影响，尤其是对于有远程症状性病因或无缓解的患者。缓解组的情况不如预期，主要是由于该组中远程症状性病因的患者数量较多。与其他人的研究一致，我们得出结论，儿童期起病的癫痫与较低的教育程度有关，即使是特发性病因和缓解期的患者；可能与此相关，他们的职业水平也低于预期。
