Abstract
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.
Highlights
Lynch syndrome (LS) is the most common hereditary colorectal cancer (CRC) syndrome
Study design LS patients within our healthcare system were identified via diagnoses codes in the Electronic medical record (EMR), manual abstraction was used to determine all recommendations for LS-related care documented within the EMR, and patient adherence to these recommendations was examined using procedural
A clinical trial of universal tumor screening (UTS) for patients receiving CRC surgery between January 2012 and December 2015 resulted in the initial identification and subsequent genetic diagnosis of 8 patients in our cohort
Summary
Lynch syndrome (LS) is the most common hereditary colorectal cancer (CRC) syndrome. Lynch syndrome (LS) is the most common hereditary colorectal cancer (CRC) syndrome, accounting for about 3% of CRC cases [1]. Patients with LS are at an increased risk for other malignancies such as endometrial, stomach, small bowel, and ovarian cancers [2]. Research has shown that patients with LS have reduced life-expectancy [8], but CRC surveillance reduces risk of cancer and improves survival [9]. While there have been efforts to Mittendorf et al Hereditary Cancer in Clinical Practice (2019) 17:31 improve LS diagnosis rates, less is known about the care patients receive after diagnosis
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