■中心癌症登记处负责管理适当的研究联系人和记录发布。Donotcontact(DNC)标志被一些登记处用来指示不应该被联系或包括在研究中的患者。DNC编码实践和定义的纵向变化可能导致缺乏代码标准化,并且不准确地将个人纳入或排除在研究之外。
■我们在犹他州癌症登记处对DNC病例进行了全面的手动审查,以告知对DNC代码定义标准化的更新,以及使用DNC代码排除/纳入研究。
■我们在SEER数据管理系统(SEER*DMS)或研究数据库中确定了858个具有当前或先前DNC标志的病例,患有1957-2021年诊断出的癌症。我们回顾了与病例和医生对应的扫描图像,事件形式,并在SEER*DMS和研究数据库中发表评论。我们评估了是否有证据支持当前的DNC代码,不同的DNC代码,或任何代码的证据不足。
■在SEER*DMS中具有当前DNC标志和原因代码的755个案例中,分布如下:58%,患者未要求接触;20%,医生否认;13%,患者不知道自己患有癌症;4%,患者精神残疾[原文如此];4%,其他;以及1%,未知。在5%的案例中,我们发现了支持不同DNC原因代码的证据.在由于SEER*DMS中的先前DNC标志(n=10)或研究数据库中的DNC标志而包括的病例中(即,SEER*DMS中没有当前DNC标志或原因代码的情况,n=93),我们在50%和40%的案例中发现了支持添加SEER*DMSDNC标志和原因代码的证据,分别。我们用过时的术语(患者是智障人士)和可能无法准确反映患者研究偏好的代码(医生在未询问患者的情况下拒绝)确定了DNC原因代码。为了解决这个问题,我们发现了新的原因代码,退休的旧原因代码,并更新了当前的原因代码定义和研究处理。
■人工审核的时间和资源投入使我们能够识别和,在大多数情况下,解决DNC标志和原因代码中的不一致,当他们失踪时添加原因代码。这个过程很有价值,因为它建议对DNC代码定义和研究处理进行建议的更改,以确保在研究中更适当地纳入和排除癌症病例。
UNASSIGNED: Central cancer registries are responsible for managing appropriate research contacts and record releases. Do not contact (DNC) flags are used by some registries to indicate patients who should not be contacted or included in research. Longitudinal changes in DNC coding practices and definitions may result in a lack of code standardization and inaccurately include or exclude individuals from research.
UNASSIGNED: We performed a comprehensive manual review of DNC cases in the Utah Cancer Registry to inform updates to standardization of DNC code definitions, and use of DNC codes for exclusion/inclusion in research.
UNASSIGNED: We identified 858 cases with a current or prior DNC flag in the SEER Data Management System (SEER*DMS) or a research database, with cancers diagnosed from 1957-2021. We reviewed scanned images of correspondence with cases and physicians, incident forms, and comments in SEER*DMS and research databases. We evaluated whether there was evidence to support the current DNC code, a different DNC code, or insufficient evidence for any code.
UNASSIGNED: Of the 755 cases that had a current DNC flag and reason code in SEER*DMS, the distribution was as follows: 58%, Patient requested no contact; 20%, Physician denied; 13%, Patient is not aware they have cancer; 4%, Patient is mentally disabled [sic]; 4%, Other; and 1%, Unknown. In 5% of these cases, we found evidence supporting a different DNC reason code. Among cases included because of a prior DNC flag in SEER*DMS (n = 10) or a DNC flag in a research database (ie, cases with no current DNC flag or reason code in SEER*DMS, n = 93), we found evidence supporting the addition of a SEER*DMS DNC flag and reason code in 50% and 40% of cases, respectively. We identified DNC reason codes with outdated terminology (Patient is mentally disabled) and codes that may not accurately reflect patient research preferences (Physician denied without asking the patient). To address this, we identified new reason codes, retired old reason codes, and updated current reason code definitions and research handlings.
UNASSIGNED: The time and resource investment in manual review allowed us to identify and, in most cases, resolve discordance in DNC flags and reason codes, adding reason codes when they were missing. This process was valuable because it informed recommended changes to DNC code definitions and research handlings that will ensure more appropriate inclusion and exclusion of cancer cases in research.