Background: 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.
Objective: This study was aimed at exploring the establishment of a pediatric CP registry in Kuwait.
Methods: 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.
Results: 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.
Conclusion: The establishment of a pediatric CP registry in Kuwait is feasible, on the basis of our data.
Brehaut JC, Kohen DE, Raina P, Walter SD, Russell DJ, Swinton M, O'Donnell M, Rosenbaum P.Pediatrics. 2004 Aug;114(2):e182-91. doi: 10.1542/peds.114.2.e182.PMID: 15286255
Rosenbaum P., Paneth N., Leviton A., Goldstein M., Bax M., Damiano D., et al. A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol Suppl. Feb 2007;109:8–14. - PubMed
Sadowska M., Sarecka-Hujar B., Kopyta I. Cerebral palsy: current opinions on definition, epidemiology, risk factors, classification and treatment options. Neuropsychiatr Dis Treat. 2020;16:1505–1518. doi: 10.2147/ndt.S235165. - DOI - PMC - PubMed
Oskoui M., Coutinho F., Dykeman J., Jetté N., Pringsheim T. An update on the prevalence of cerebral palsy: a systematic review and meta-analysis. Dev Med Child Neurol. Jun 2013;55(6):509–519. doi: 10.1111/dmcn.12080. - DOI - PubMed
Paneth N., Hong T., Korzeniewski S. The descriptive epidemiology of cerebral palsy. Clin Perinatol. Jun 2006;33(2):251–267. doi: 10.1016/j.clp.2006.03.011. - DOI - PubMed
Sienko S. Understanding the factors that impact the participation in physical activity and recreation in young adults with cerebral palsy (CP) Disabil Health J. Jul 2019;12(3):467–472. doi: 10.1016/j.dhjo.2019.02.008. - DOI - PubMed
Morris C., Galuppi B.E., Rosenbaum P.L. Reliability of family report for the gross motor function classification system. Dev Med Child Neurol. Jul 2004;46(7):455–460. doi: 10.1017/s0012162204000751. - DOI - PubMed
Morris C., Kurinczuk J.J., Fitzpatrick R., Rosenbaum P.L. Reliability of the manual ability classification system for children with cerebral palsy. Dev Med Child Neurol. Dec 2006;48(12):950–953. doi: 10.1017/s001216220600209x. - DOI - PubMed
Almasri N., Saleh M. Inter-rater agreement of the Arabic gross motor classification system expanded & revised in children with cerebral palsy in Jordan. Disabil Rehabil. 2015;37(20):1895–1901. doi: 10.3109/09638288.2014.986589. - DOI - PubMed
Hurley D.S., Sukal-Moulton T., Gaebler-Spira D., Krosschell K.J., Pavone L., Mutlu A., et al. Systematic review of cerebral palsy registries/surveillance groups: relationships between registry characteristics and knowledge dissemination. Int J Phys Med Rehabil. Apr 2015;3(2) doi: 10.4172/2329-9096.1000266. - DOI - PMC - PubMed
Hurley D.S., Sukal-Moulton T., Msall M.E., Gaebler-Spira D., Krosschell K.J., Dewald J.P. The cerebral palsy research registry: development and progress toward national collaboration in the United States. J Child Neurol. Dec 2011;26(12):1534–1541. doi: 10.1177/0883073811408903. - DOI - PMC - PubMed
Hadjinicolaou A., Ng P., Koclas L., Lamarre C., Malouin F., Pigeon N., et al. Is cerebral palsy changing in high resource settings? Data from the Quebec cerebral palsy registry. J Child Neurol. Sep 2019;34(10):567–573. doi: 10.1177/0883073819845272. - DOI - PubMed
Almasri N.A., Saleh M., Abu-Dahab S., Malkawi S.H., Nordmark E. Development of a cerebral palsy follow-up registry in Jordan (CPUP-Jordan) Child Care Health Dev. Jan 2018;44(1):131–139. doi: 10.1111/cch.12527. - DOI - PubMed
Alkhamis M.A., Al Youha S., Khajah M.M., Ben Haider N., Alhardan S., Nabeel A., et al. Spatiotemporal dynamics of the COVID-19 pandemic in the State of Kuwait. Int J Infect Dis. Sep 2020;98:153–160. doi: 10.1016/j.ijid.2020.06.078. - DOI - PMC - PubMed
Khandaker G., Smithers-Sheedy H., Islam J., Alam M., Jung J., Novak I., et al. Bangladesh Cerebral Palsy Register (BCPR): a pilot study to develop a national cerebral palsy (CP) register with surveillance of children for CP. BMC Neurol. Sep 25 2015;15:173. doi: 10.1186/s12883-015-0427-9. - DOI - PMC - PubMed
Khandaker G., Muhit M., Karim T., Smithers-Sheedy H., Novak I., Jones C., et al. Epidemiology of cerebral palsy in Bangladesh: a population-based surveillance study. Dev Med Child Neurol. May 2019;61(5):601–609. doi: 10.1111/dmcn.14013. - DOI - PubMed
Al Imam M.H., Jahan I., Das M.C., Chandra Das M., Muhit M., Smithers-Sheedy H., et al. Rehabilitation status of children with cerebral palsy in Bangladesh: findings from the Bangladesh cerebral palsy register. PLoS One. 2021;16(5) doi: 10.1371/journal.pone.0250640. - DOI - PMC - PubMed
Altonoby A., Tawfek M., Abdelaziem F., Kilany A. Establish registry of cerebral palsy in Tanta Egypt. Int J Ther Rehabil Res. 2017;6(2):174.
