Division of Epidemiology, Department of Internal Medicine, School of Medicine, University of Utah, Salt Lake City, Utah.
Utah Cancer Registry, University of Utah Health, University of Utah, Salt Lake City, Utah.
Am J Epidemiol. 2019 May 1;188(5):928-939. doi: 10.1093/aje/kwz011.
When recruiting research participants through central cancer registries, high response fractions help ensure population-based representation. We conducted multivariable mixed-effects logistic regression to identify case and study characteristics associated with making contact with and obtaining cooperation of Utah cancer cases using data from 17 unique recruitment efforts undertaken by the Utah Cancer Registry (2007-2016) on behalf of the following studies: A Population-Based Childhood Cancer Survivors Cohort Study in Utah, Comparative Effectiveness Analysis of Surgery and Radiation for Prostate Cancer (CEASAR Study), Costs and Benefits of Follow-up Care for Adolescent and Young Adult Cancers, Study of Exome Sequencing for Head and Neck Cancer Susceptibility Genes, Genetic Epidemiology of Chronic Lymphocytic Leukemia, Impact of Remote Familial Colorectal Cancer Risk Assessment and Counseling (Family CARE Project), Massively Parallel Sequencing for Familial Colon Cancer Genes, Medullary Thyroid Carcinoma (MTC) Surveillance Study, Osteosarcoma Surveillance Study, Prostate Cancer Outcomes Study, Risk Education and Assessment for Cancer Heredity Project (REACH Project), Study of Shared Genomic Segment Analysis and Tumor Subtyping in High-Risk Breast-Cancer Gene Pedigrees, Study of Shared Genomic Segment Analysis for Localizing Multiple Myeloma Genes. Characteristics associated with lower odds of contact included Hispanic ethnicity (odds ratio (OR) = 0.34, 95% confidence interval (CI): 0.27, 0.41), nonwhite race (OR = 0.46, 95% CI: 0.35, 0.60), and younger age at contact. Years since diagnosis was inversely associated with making contact. Nonwhite race and age ≥60 years had lower odds of cooperation. Study features with lower odds of cooperation included longitudinal design (OR = 0.50, 95% CI: 0.41, 0.61) and study brochures (OR = 0.70, 95% CI: 0.54, 0.90). Increased odds of cooperation were associated with including a questionnaire (OR = 3.19, 95% CI: 1.54, 6.59), postage stamps (OR = 1.60, 95% CI: 1.21, 2.12), and incentives (OR = 1.62, 95% CI: 1.02, 2.57). Among cases not responding after the first contact, odds of eventual response were lower when >10 days elapsed before subsequent contact (OR = 0.71, 95% CI: 0.59, 0.85). Obtaining high response is challenging, but study features identified in this analysis support better results when recruiting through central cancer registries.
当通过中央癌症登记处招募研究参与者时,高响应率有助于确保基于人群的代表性。我们进行了多变量混合效应逻辑回归分析,以确定与犹他癌症病例取得联系和获得合作的病例和研究特征,这些数据来自犹他癌症登记处(2007-2016 年)代表以下研究进行的 17 项独特的招募工作:犹他州基于人群的儿童癌症幸存者队列研究、前列腺癌手术和放疗的比较效果分析(CEASAR 研究)、青少年和年轻成人癌症随访护理的成本和效益、头颈部癌症易感性基因外显子测序研究、慢性淋巴细胞白血病的遗传流行病学、远程家族结直肠癌风险评估和咨询的影响(家庭关怀项目)、家族性结肠癌基因的大规模平行测序、甲状腺髓样癌(MTC)监测研究、骨肉瘤监测研究、前列腺癌结局研究、癌症遗传风险教育和评估项目(REACH 项目)、共享基因组片段分析和高危乳腺癌基因系谱中肿瘤亚型研究、共享基因组片段分析用于定位多发性骨髓瘤基因。联系可能性较低的特征包括西班牙裔(比值比(OR)=0.34,95%置信区间(CI):0.27,0.41)、非白种人(OR=0.46,95%CI:0.35,0.60)和联系时年龄较小。诊断后年份与取得联系呈负相关。非白种人和年龄≥60 岁的人合作的可能性较低。合作可能性较低的研究特征包括纵向设计(OR=0.50,95%CI:0.41,0.61)和研究手册(OR=0.70,95%CI:0.54,0.90)。包括问卷(OR=3.19,95%CI:1.54,6.59)、邮票(OR=1.60,95%CI:1.21,2.12)和激励措施(OR=1.62,95%CI:1.02,2.57)与合作可能性增加有关。在首次联系后未回复的病例中,随后联系前超过 10 天的情况下,最终回复的可能性较低(OR=0.71,95%CI:0.59,0.85)。获得高响应率具有挑战性,但本分析中确定的研究特征支持通过中央癌症登记处进行招募时获得更好的结果。