Makerere University College of Health Sciences, Kampala, Uganda; Centre for Tropical Neuroscience, Kampala, Uganda; Institute of Health and Equity, Medical College of Wisconsin, Milwaukee, WI, USA.
Makerere University College of Health Sciences, Kampala, Uganda; Centre for Tropical Neuroscience, Kampala, Uganda.
Epilepsy Behav. 2021 Jan;114(Pt A):107584. doi: 10.1016/j.yebeh.2020.107584. Epub 2020 Nov 25.
Epilepsy remains a leading chronic neurological disorder in Low- and Middle-Income Countries. In Uganda, the highest burden is among young rural people. We aimed to; (i) describe socio-economic status (including schooling), and household poverty in adolescents living with epilepsy (ALE) compared to unaffected counterparts in the same communities and (ii) determine the factors associated with the overall quality of life (QoL).
This was a cross-sectional survey nested within a larger study of ALE compared to age-matched healthy community children in Uganda. Between Sept 2016 to Sept 2017, 154 ALE and 154 healthy community controls were consecutively recruited. Adolescents recruited were frequency and age-matched based on age categories 10-14 and 15-19 years. Clinical history and standardized assessments were conducted. One control participant had incomplete assessment and was excluded. The primary outcome was overall QoL and key variables assessed were schooling status and household poverty. Descriptive and multivariable linear regression analysis were conducted for independent associations with overall QoL.
Mean (SD) age at seizure onset was 8.8 (3.9) years and median (IQR) monthly seizure burden was 2 (1-4). Epilepsy was associated with living in homes with high household poverty; 95/154 (61.7%) ALE lived in the poorest homes compared to 68/153 (44.5%) of the healthy adolescents, p = 0.001. Nearly two-thirds of ALE had dropped out of school and only 48/154 (31.2%) were currently attending school compared to 136/153 (88.9%) of healthy controls, p < 0.001. QoL was lowest among ALE who never attended school (p < 0.001), with primary education (p = 0.006) compared to those with at least secondary education. Stigma scores [mean(SD)] were highest among ALE in the poorest [69.1(34.6)], and wealthy [70.2(32.2)] quintiles compared to their counterparts in poorer [61.8(31.7)], medium [68.0(32.7)] and wealthiest [61.5(33.3)] quintiles, though not statistically significant (p = 0.75). After adjusting for covariates, ALE currently attending school had higher overall QoL compared to their counterparts who never attended school (β = 4.20, 95%CI: 0.90,7.49, p = 0.013). QoL scores were higher among ALE with ≥secondary education than those with no or primary education (β = 10.69, 95%CI: 1.65, 19.72).
ALE in this rural area are from the poorest households, are more likely to drop out of school and have the lowest QoL. Those with poorer seizure control are most affected. ALE should be included among vulnerable population groups and in addition to schooling, strategies for seizure control and addressing the epilepsy treatment gap in affected homes should be specifically targeted in state poverty eradication programs.
癫痫仍然是低收入和中等收入国家的主要慢性神经障碍。在乌干达，农村年轻人的负担最重。我们的目的是：（i）描述患有癫痫的青少年（ALE）与同一社区中未受影响的同龄人相比的社会经济地位（包括教育）和家庭贫困情况；（ii）确定与整体生活质量（QoL）相关的因素。
这是一项横断面调查，嵌套在乌干达对 ALE 与年龄匹配的健康社区儿童进行的更大研究中。在 2016 年 9 月至 2017 年 9 月期间，连续招募了 154 名 ALE 和 154 名健康社区对照者。根据年龄类别 10-14 岁和 15-19 岁，根据频率和年龄对招募的青少年进行匹配。进行了临床病史和标准化评估。一名对照参与者评估不完整，被排除在外。主要结局是整体 QoL，评估的关键变量是教育状况和家庭贫困。进行了描述性和多变量线性回归分析，以确定与整体 QoL 相关的独立因素。
癫痫发作开始的平均（SD）年龄为 8.8（3.9）岁，中位数（IQR）每月发作负担为 2（1-4）。癫痫与居住在贫困家庭有关；154 名 ALE 中有 95 名（61.7%）居住在最贫困的家庭，而 153 名健康青少年中只有 68 名（44.5%），p=0.001。近三分之二的 ALE 辍学，只有 48/154（31.2%）人目前在上学，而 136/153（88.9%）健康对照者在上学，p<0.001。从未上过学的 ALE 的 QoL 最低（p<0.001），接受过小学教育（p=0.006）的 ALE 与至少接受过中学教育的 ALE 相比。在最贫困[69.1（34.6）]和最富裕[70.2（32.2）]五分位数的 ALE 中，耻辱感评分[平均值（SD）]最高，而在较贫穷[61.8（31.7）]、中等[68.0（32.7）]和最富裕[61.5（33.3）]五分位数的 ALE 中，评分较低，但无统计学意义（p=0.75）。在校接受教育的 ALE 在校时间与从未上过学的同龄人相比，整体 QoL 更高（β=4.20，95%CI：0.90，7.49，p=0.013）。接受过中学及以上教育的 ALE 的 QoL 评分高于接受过小学或没有接受过教育的 ALE（β=10.69，95%CI：1.65，19.72）。
在这个农村地区，患有癫痫的青少年来自最贫困的家庭，更有可能辍学，生活质量最低。那些癫痫发作控制较差的人受影响最大。应将 ALE 纳入弱势群体中，除了教育之外，还应针对受影响家庭中的癫痫治疗差距，在国家消除贫困方案中特别针对癫痫发作控制和解决癫痫治疗差距的策略。
