"Go ahead and screen" - advice to healthcare systems for routine lynch syndrome screening from interviews with newly diagnosed colorectal cancer patients.
"Go ahead and screen" - advice to healthcare systems for routine lynch syndrome screening from interviews with newly diagnosed colorectal cancer patients.
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DOI：
10.1186/s13053-023-00270-4
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发表时间：
2023-11-17
影响因子：
1.7
通讯作者：
Hunter, Jessica Ezzell
中科院分区：
文献类型：
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作者：
Schneider, Jennifer L.;Firemark, Alison J.;Gille, Sara;Davis, James;Pawloski, Pamala A.;Liang, Su-Ying;Epstein, Mara M.;Lowery, Jan;Lu, Christine Y.;Sharaf, Ravi N.;Burnett-Hartman, Andrea N.;Schlieder, Victoria;Salvati, Zachary M.;Cragun, Deborah;Rahm, Alanna Kulchak;Hunter, Jessica Ezzell
关键词：
林奇综合征（LS）是遗传性结直肠癌（CRC）的最常见原因。建议对新诊断的 CRC 病例进行普遍肿瘤筛查 (UTS)，以帮助诊断 LS 并降低癌症相关的发病率和死亡率。然而，并非所有卫生系统都采用 UTS 流程，并且由于系统和患者层面的复杂性，实施可能会不一致。 为了从患者的角度确定 UTS 流程的障碍、促进因素和改进建议，我们对最近诊断为 CRC 但未筛查或了解 LS 的患者进行了深入的半结构化访谈。患者是从美国八个不同地区的卫生系统招募的。访谈通过电话进行，时长 60 分钟，进行录音和转录。采用归纳、持续比较分析方法。 我们在 8 个系统中完成了 75 次访谈。大多数参与者是白人 (79%)，大约一半 (52%) 是男性，平均年龄为 60 岁。大多数人自我报告之前没有（60%）或很少（40%）了解 LS。总体而言，96% 的患者表示 UTS 应该成为 CRC 肿瘤的常规护理标准，并一致列举了想要了解其 LS 状态并参与 LS 识别过程的四个主要动机：“知识就是力量”； “家庭知识”； “预防和检测”；和“治疗和监测”。与 LS 筛查和识别过程相关的常见问题包括：为患者带来预期担忧、基因检测的潜在成本和准确性，以及可能会影响 LS 诊断的健康保险范围。患者建议卫生系统亲自或通过训练有素的 LS 专家通过电话传达 LS 结果；提供有关 LS、筛查步骤以及任何后续监测建议的主动口头和书面教育；并支持患者将 LS 筛查情况告知其任何血亲。 我们的定性研究结果表明，CRC 患者强烈希望医疗保健系统定期实施和提供 UTS。患者为卫生系统提供重要见解，以指导未来 UTS 和其他 LS 筛查项目的实施和优化，最大限度地诊断 LS 患者，并改善癌症相关的监测和结果。 不可用：不是临床试验。 在线版本包含可在 10.1186/s13053-023-00270-4 获取的补充材料。
Lynch syndrome (LS) is the most common cause of inherited colorectal cancer (CRC). Universal tumor screening (UTS) of newly diagnosed CRC cases is recommended to aid in diagnosis of LS and reduce cancer-related morbidity and mortality. However, not all health systems have adopted UTS processes and implementation may be inconsistent due to system and patient-level complexities. To identify barriers, facilitators, and suggestions for improvements of the UTS process from the patient perspective, we conducted in-depth, semi-structured interviews with patients recently diagnosed with CRC, but not screened for or aware of LS. Patients were recruited from eight regionally diverse US health systems. Interviews were conducted by telephone, 60-minutes, audio-recorded, and transcribed. An inductive, constant comparative analysis approach was employed. We completed 75 interviews across the eight systems. Most participants were white (79%), about half (52%) were men, and the mean age was 60 years. Most self-reported either no (60%) or minimal (40%) prior awareness of LS. Overall, 96% of patients stated UTS should be a routine standard of care for CRC tumors, consistently citing four primary motivations for wanting to know their LS status and engage in the process for LS identification: “knowledge is power”; “family knowledge”; “prevention and detection”; and “treatment and surveillance.” Common concerns pertaining to the process of screening for and identifying LS included: creating anticipatory worry for patients, the potential cost and the accuracy of the genetic test, and possibly having one’s health insurance coverage impacted by the LS diagnosis. Patients suggested health systems communicate LS results in-person or by phone from a trained expert in LS; offer proactive verbal and written education about LS, the screening steps, and any follow-up surveillance recommendations; and support patients in communicating their LS screening to any of their blood relatives. Our qualitative findings demonstrate patients with CRC have a strong desire for healthcare systems to regularly implement and offer UTS. Patients offer key insights for health systems to guide future implementation and optimization of UTS and other LS screening programs and maximize diagnosis of individuals with LS and improve cancer-related surveillance and outcomes. Not available: not a clinical trial. The online version contains supplementary material available at 10.1186/s13053-023-00270-4.
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影响因子：
--
作者：
Hao J;Hassen D;Gudgeon JM;Snyder SR;Hampel H;Williams MS;Sharaf RN;Lu CY;Williams JL;Schlieder V;Rahm AK
通讯作者：
Rahm AK
影响因子：
6.2
作者：
Hunter, Jessica Ezzell;Zepp, Jamilyn M.;Goddard, Katrina A. B.
通讯作者：
Goddard, Katrina A. B.
影响因子：
1.9
作者：
Dicks, Elizabeth;Pullman, Daryl;Etchegary, Holly
通讯作者：
Etchegary, Holly
DOI：
10.6004/jnccn.2019.0044
发表时间：
2019-09-01
影响因子：
13.4
作者：
Gupta, Samir;Provenzale, Dawn;Ogba, Ndiya
通讯作者：
Ogba, Ndiya
影响因子：
2.2
作者：
Clarke, Elizabeth V.;Muessig, Kristin R.;Goddard, Katrina A. B.
通讯作者：
Goddard, Katrina A. B.