Hussain Syeda Ra'ana, Orwa James, Sokhi Dilraj Singh, Kathomi Caroline Mbuba, Dossajee Hussein, Miyanji Osman, Ngugi Anthony, Samia Pauline
Aga Khan University Medical College of East Africa, The Aga Khan University Hospital, Nairobi, P. O. Box 30270-00100, Nairobi, Kenya.
MP Shah Hospital, P.O Box 11497-00800, Nairobi, Kenya.
Seizure. 2020 Jan 22;76:100-104. doi: 10.1016/j.seizure.2020.01.007.
Epilepsy is a chronic neurological disorder that is often diagnosed in childhood and may negatively impact physical, social and psychological abilities. Most tools measuring quality of life (QoL) rely on parent/caregiver feedback rather than the child's perspective. CHEQOL-25 is a QoL tool that documents both child and caregiver perspectives across five domains. The primary objective was to determine the QoL of children living with epilepsy (CWE) using the CHEQOL-25 tool in a Kenyan paediatric population. Other objectives were to describe the correlation between the caregivers' and children's' perspectives and describe factors affecting QoL.
We conducted a cross-sectional study across four sites in Nairobi. Quantitative data was collected using a self-administered CHEQOL-25 questionnaire. Caregivers and their children aged 7-15 years attending neurology clinics participated in the study. We used Kappa statistics to compare child and caregiver responses.
A total of 354 participants were interviewed (177 children and 177 caregivers). A good QoL was reported by 60.5 % of children with a similar caregiver perception of 56.5 %. Caregivers with little education and male caregivers were associated with a poor QoL (p = 0.01); other socio-demographic factors had little impact on the measured QoL of CWE. Parent and child questionnaires correlated well in terms of response in terms of interpersonal (p = 0.001) and intrapersonal (p = 0.004) domains.
This study demonstrated that a good quality of life was reported by the majority of CWE and their caregivers, although some factors such as a male caregiver gender and lower level of education were associated with poor QoL.
癫痫是一种慢性神经疾病，常在儿童期被诊断出来，可能会对身体、社交和心理能力产生负面影响。大多数衡量生活质量（QoL）的工具依赖于家长/照顾者的反馈，而非孩子自身的看法。CHEQOL-25是一种生活质量工具，记录了孩子和照顾者在五个领域的看法。主要目的是使用CHEQOL-25工具来确定肯尼亚儿科人群中癫痫患儿（CWE）的生活质量。其他目的是描述照顾者和孩子看法之间的相关性，并描述影响生活质量的因素。
我们在内罗毕的四个地点进行了一项横断面研究。使用自行填写的CHEQOL-25问卷收集定量数据。前往神经科诊所就诊的7至15岁的照顾者及其孩子参与了该研究。我们使用卡方统计量来比较孩子和照顾者的回答。
总共采访了354名参与者（177名儿童和177名照顾者）。60.5%的儿童报告生活质量良好，照顾者中有类似看法的比例为56.5%。受教育程度低的照顾者和男性照顾者与较差的生活质量相关（p = 0.01）；其他社会人口统计学因素对所测量的癫痫患儿生活质量影响不大。在人际（p = 0.001）和个人（p = 0.004）领域的回答方面，家长和孩子的问卷相关性良好。
本研究表明，大多数癫痫患儿及其照顾者报告生活质量良好，尽管一些因素，如男性照顾者性别和较低的教育水平与较差的生活质量相关。
