Almutairi Anwar B, AlAbdullkarim Arwa E, Al-Shatti Afnan A
Physical Therapy Department, School of Allied Health, Kuwait University, Kuwait.
Physical Therapy Department, Ministry of Health, Kuwait.
J Taibah Univ Med Sci. 2023 Feb 13;18(5):947-953. doi: 10.1016/j.jtumed.2023.02.001. eCollection 2023 Oct.
Cerebral palsy (CP), the most common motor disability in childhood, comprises a group of permanent non-progressive disorders affecting the antenatal, neonatal, or early postnatal development of areas in the brain responsible for posture and movement. Registries for children with CP, or surveillance programs, have been a source of consistently increasing research productivity; 38 related articles were published in 2013. In Kuwait, a CP registry would provide baseline information on children with CP and their parents. The registry could include demographic information obtained through parental interviews, or review of the mothers' and the children's medical charts.
This study was aimed at exploring the establishment of a pediatric CP registry in Kuwait.
In this exploratory study, caregivers of children with CP were recruited from rehabilitation clinics around Kuwait. The inclusion criteria were 1) boys or girls with a documented diagnosis of CP made between 6 months and 18 years of age, 2) caregivers with permanent residency in Kuwait, and 4) caregivers speaking Arabic and/or English fluently. The variables collected comprised registry and feasibility variables. Registry-associated variables comprised demographic and medical information about the children, and caregivers' willingness to be contacted for a follow-up or participation in other research projects. Feasibility variables were the percentage of information gathered, and the willingness of caregivers to participate in, and of therapists to recruit for, the registry.
Fifty-three caregivers of children with CP participated in this study. The mean age of the recruited children with CP was 5 years and 5 months (SD = 3 y 4 m, range = 11 m to 16 y 8 m/female n = 25). GMFCS level V was reported by half of the sample (n = 29/55.77%). Of the 112 caregivers screened, fewer than half (n = 53 of 112/47.32%) participated in the study. Most caregivers (n = 48/90.56%) used the Arabic version of the form.
The establishment of a pediatric CP registry in Kuwait is feasible, on the basis of our data.
脑性瘫痪（CP）是儿童期最常见的运动障碍，包括一组永久性非进行性疾病，影响负责姿势和运动的大脑区域在产前、新生儿期或出生后早期的发育。CP患儿登记处或监测项目一直是研究产出持续增加的一个来源；2013年发表了38篇相关文章。在科威特，一个CP登记处将提供有关CP患儿及其父母的基线信息。该登记处可包括通过家长访谈或查阅母亲和儿童的病历获得的人口统计学信息。
本研究旨在探索在科威特建立一个儿科CP登记处。
在这项探索性研究中，从科威特各地的康复诊所招募CP患儿的照料者。纳入标准为：1）年龄在6个月至18岁之间、有CP确诊记录的男孩或女孩；2）在科威特拥有永久居留权的照料者；4）能流利说阿拉伯语和/或英语的照料者。收集的变量包括登记处和可行性变量。与登记处相关的变量包括有关儿童的人口统计学和医学信息，以及照料者对于随访或参与其他研究项目的联系方式的意愿。可行性变量为收集到的信息的百分比，以及照料者参与登记处的意愿和治疗师为登记处招募人员的意愿。
53名CP患儿的照料者参与了本研究。所招募的CP患儿的平均年龄为5岁5个月（标准差=3岁4个月，范围=11个月至16岁8个月/女性n=25）。样本中有一半（n=29/55.77%）报告为GMFCS V级。在112名接受筛查的照料者中，不到一半（112名中的53名/47.32%）参与了研究。大多数照料者（n=48/90.56%）使用表格的阿拉伯语版本。
根据我们的数据，在科威特建立一个儿科CP登记处是可行的。
