BackgroundLynch syndrome (LS) is the most common hereditary colorectal cancer (CRC) syndrome. This study assesses trends in diagnosis of LS and adherence to recommended LS-related care in a large integrated healthcare organization (~ 575,000 members).MethodsElectronic medical record (EMR) data (1999–2015) were examined to identify patients with a diagnosis of LS. We examined their LS-associated care recommendations and adherence to these recommendations. Qualitative patient and provider interviews were conducted with the aim of identifying opportunities for improved care delivery.ResultsWe identified 74 patients with a diagnosis of LS; 64% were diagnosed with a LS-related malignancy prior to their diagnosis of LS. The time to LS diagnosis following development of a LS-related cancer decreased over time: before 2009 11% of individuals received a diagnosis of LS within 1 year of developing a LS-related cancer compared to 83% after 2009 (p < 0.0001). Colonoscopy recommendations were documented in the EMR for almost all patients with LS (96%). Documentation of other recommendations for cancer surveillance was less commonly found. Overall, patient adherence to colonoscopy was high (M = 81.5%; SD = 32.7%), and adherence to other recommendations varied. To improve care coordination, patients and providers suggested providing automated reminder prompts for LS-related surveillance, adding a LS-specific diagnosis code, and providing guidelines for LS-related surveillance in the EMR.ConclusionsWe identified fewer than expected patients with LS in our large care system, indicating that there is still a diagnostic care gap. However, patients with LS were likely to receive and follow CRC surveillance recommendations. Recommendations for and adherence to extracolonic surveillance were variable. Improved care coordination and clearer documentation of the LS diagnosis is needed.

中文翻译：

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林奇综合征诊断后的推荐护理和护理依从性：一项混合方法研究

背景林奇综合征（LS）是最常见的遗传性结直肠癌（CRC）综合征。本研究评估了大型综合医疗机构（约 575,000 名成员）中 LS 诊断的趋势和对推荐的 LS 相关护理的依从性。方法检查电子病历 (EMR) 数据（1999-2015）以确定诊断为 LS 的患者. 我们检查了他们与 LS 相关的护理建议以及对这些建议的遵守情况。进行定性患者和提供者访谈的目的是确定改善护理服务的机会。结果我们确定了 74 名诊断为 LS 的患者；64% 在诊断 LS 之前被诊断出患有 LS 相关的恶性肿瘤。随着 LS 相关癌症的发展，到 LS 诊断的时间随着时间的推移而减少：在 2009 年之前，11% 的人在发展为 LS 相关癌症的 1 年内被诊断为 LS，而 2009 年之后这一比例为 83% (p < 0.0001)。几乎所有 LS 患者 (96%) 都在 EMR 中记录了结肠镜检查建议。其他癌症监测建议的文件很少见。总体而言，患者对结肠镜检查的依从性很高（M = 81.5%；SD = 32.7%），并且对其他建议的依从性各不相同。为了改善护理协调，患者和提供者建议为 LS 相关监测提供自动提醒提示，添加 LS 特定诊断代码，并在 EMR 中为 LS 相关监测提供指南。护理系统，表明仍然存在诊断护理差距。然而，LS 患者可能会接受并遵循 CRC 监测建议。对结肠外监测的建议和依从性参差不齐。需要改进护理协调和更清晰的 LS 诊断记录。