Patient and provider perspectives on adherence to and care coordination of lynch syndrome surveillance recommendations: findings from qualitative interviews.

Hereditary Cancer in Clinical Practice
Jennifer L SchneiderJacob A Reiss

Abstract

Patients with a genetic variant associated with Lynch syndrome (LS) are recommended to undergo frequent and repeated cancer surveillance activities to minimize cancer-related morbidity and mortality. Little is known about how patients and primary care providers (PCPs) track and manage these recommendations. We conducted a small exploratory study of patient and PCP experiences with recommended LS surveillance activities and communication with family members in an integrated health care system. We used in-depth interviews with patients and providers to understand how surveillance is coordinated and monitored following confirmation of LS. We recruited patients with a range of ages/gender, and providers with at least at least one patient with a molecular diagnosis of LS. All interviews were recorded, transcribed, and content analyzed by a trained qualitative methodologist. Twenty-two interviews were completed with 12 patients and 10 providers. Most patients (10) had detailed knowledge of surveillance recommendations, but were less sure of time intervals. While all patients reported receiving initial education about their surveillance recommendations from a genetic counselor, seven did not follow-up with a genetic counselor in subse...Continue Reading

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Citations

Aug 20, 2019·Hereditary Cancer in Clinical Practice·Kaitlin M McGarragleTae L Hart
Jan 1, 2020·Hereditary Cancer in Clinical Practice·Kathleen F MittendorfKatrina A B Goddard
Aug 13, 2020·Patient Education and Counseling·Gemme Campbell-SalomeAmy C Sturm
Jul 25, 2021·Cancers·Raphael OlivierJean-Christophe Saurin

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