Dickinson Heather, Parkinson Kathryn, McManus Vicki, Arnaud Catherine, Beckung Eva, Fauconnier Jérôme, Michelsen Susan I, Parkes Jackie, Schirripa Giorgio, Thyen Ute, Colver Allan
School of Population and Health Sciences, Newcastle University, 21 Claremont Place, Newcastle, NE2 4AA, UK.
BMC Public Health. 2006 Nov 6;6:273. doi: 10.1186/1471-2458-6-273.
SPARCLE is a cross-sectional survey in nine European regions, examining the relationship of the environment of children with cerebral palsy to their participation and quality of life. The objective of this report is to assess data quality, in particular heterogeneity between regions, family and item non-response and potential for bias.
1,174 children aged 8-12 years were selected from eight population-based registers of children with cerebral palsy; one further centre recruited 75 children from multiple sources. Families were visited by trained researchers who administered psychometric questionnaires. Logistic regression was used to assess factors related to family non-response and self-completion of questionnaires by children.
431/1,174 (37%) families identified from registers did not respond: 146 (12%) were not traced; of the 1,028 traced families, 250 (24%) declined to participate and 35 (3%) were not approached. Families whose disabled children could walk unaided were more likely to decline to participate. 818 children entered the study of which 500 (61%) self-reported their quality of life; children with low IQ, seizures or inability to walk were less likely to self-report. There was substantial heterogeneity between regions in response rates and socio-demographic characteristics of families but not in age or gender of children. Item non-response was 2% for children and ranged from 0.4% to 5% for questionnaires completed by parents.
While the proportion of untraced families was higher than in similar surveys, the refusal rate was comparable. To reduce bias, all analyses should allow for region, walking ability, age and socio-demographic characteristics. The 75 children in the region without a population based register are unlikely to introduce bias.
SPARCLE是一项在欧洲九个地区开展的横断面调查，旨在研究脑瘫儿童的环境与其参与度和生活质量之间的关系。本报告的目的是评估数据质量，特别是各地区之间的异质性、家庭和项目无应答情况以及偏差可能性。
从八个基于人群的脑瘫儿童登记册中选取了1174名8至12岁的儿童；另有一个中心从多个来源招募了75名儿童。经过培训的研究人员走访这些家庭，并发放心理测量问卷。采用逻辑回归分析评估与家庭无应答以及儿童自行完成问卷相关的因素。
从登记册中识别出的1174个家庭中有431个（37%）未作出回应：146个（12%）未被追踪到；在1028个被追踪到的家庭中，250个（24%）拒绝参与，35个（3%）未被联系到。残疾儿童能够独立行走的家庭更有可能拒绝参与。818名儿童进入研究，其中500名（61%）自行报告了他们的生活质量；智商低、患有癫痫或无法行走的儿童自行报告的可能性较小。各地区在应答率和家庭社会人口学特征方面存在显著异质性，但在儿童年龄或性别方面不存在异质性。儿童的项目无应答率为2%，家长完成的问卷的无应答率在0.4%至5%之间。
虽然未被追踪到的家庭比例高于类似调查，但拒绝率相当。为减少偏差，所有分析都应考虑地区、行走能力、年龄和社会人口学特征。该地区没有基于人群登记册的75名儿童不太可能引入偏差。
