Pritzlaff Mary, Yorczyk Arielle, Robinson Linda S, Pirzadeh-Miller Sara, Lin Tirun, Euhus David, Ross Theodora S
Department of Cancer Genetics, University of Texas Southwestern Medical Center's Simmons Comprehensive Cancer Center, Dallas and Moncrief Cancer Institute, Dallas, TX, USA.
J Genet Couns. 2014 Dec;23(6):1034-44. doi: 10.1007/s10897-014-9732-5. Epub 2014 Jun 12.
CancerGene Connect (CGC) is a web-based program that combines the collection of family and medical history, cancer risk assessment, psychosocial assessment, report templates, a result tracking system, and a patient follow up system. The performance of CGC was assessed in several ways: pre-appointment completion data analyzed for demographic and health variables; a time study to assess overall time per case and to compare the data entry by the genetic counselor compared to the patient, and a measured quality assessment of the program via observation and interview of patients. Prior to their appointment, 52.3% of 2,414 patients completed the online patient questionnaire section of CGC. There were significant differences in completion rates among racial and ethnic groups. County hospital patients were less likely to complete the questionnaire than insured patients (p < 0.0001); and likewise uninsured patients and patients with Medicare/Medicaid were less likely to complete the questionnaire than private patients (p < 0.0001). The average genetic counseling time per case was 82 min, with no significant differences whether the counselor or the patient completed CGC. CGC reduces genetic counselor time by approximately 14-46% compared to average time per case using traditional risk assessment and documentation methods previously reported. All surveyed users felt the questionnaire was easy to understand. CGC is an effective tool that streamlines workflow, and provides a standardized data collection tool that can be used to evaluate and improve the genetic counseling process.
癌症基因连接（CGC）是一个基于网络的程序，它整合了家族病史和医疗史收集、癌症风险评估、心理社会评估、报告模板、结果跟踪系统以及患者随访系统。CGC的性能通过多种方式进行评估：分析预约前完成数据中的人口统计学和健康变量；进行时间研究以评估每个病例的总时间，并比较遗传咨询师与患者的数据录入情况；通过对患者的观察和访谈对该程序进行质量评估。在预约前，2414名患者中有52.3%完成了CGC的在线患者问卷部分。不同种族和族裔群体的完成率存在显著差异。县医院的患者比参保患者完成问卷的可能性更小（p < 0.0001）；同样，未参保患者以及参加医疗保险/医疗补助的患者比私人患者完成问卷的可能性更小（p < 0.0001）。每个病例的平均遗传咨询时间为82分钟，无论咨询师还是患者完成CGC，均无显著差异。与之前报道的使用传统风险评估和记录方法的每个病例平均时间相比，CGC将遗传咨询师的时间减少了约14 - 46%。所有接受调查的用户都认为问卷易于理解。CGC是一个有效的工具，它简化了工作流程，并提供了一个标准化的数据收集工具，可用于评估和改进遗传咨询过程。
