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

摘要: Patients with a genetic variant associated Lynch syndrome (LS) are recommended to undergo frequent and repeated cancer surveillance activities minimize cancer-related morbidity mortality. Little is known about how patients primary care providers (PCPs) track manage these recommendations. We conducted small exploratory study of patient PCP experiences LS communication family members in an integrated health system. used in-depth interviews understand coordinated monitored following confirmation LS. recruited range ages/gender, at least one molecular diagnosis All were recorded, transcribed, content analyzed by trained qualitative methodologist. Twenty-two completed 12 10 providers. Most (10) had detailed knowledge recommendations, but less sure time intervals. While all reported receiving initial education their recommendations from counselor, seven did not follow-up counselor subsequent years. A third described taking sole responsibility for managing care. Lack routine the system (e.g., prompts activities), provider engagement barriers. PCPs generally aware LS, limited familiarity (7) viewed as rare relied on specialist expertise support. Providers typically 1 panel 1800 overall. felt strongly that management should be dedicated team specialists. (92%) member sought testing, common barriers included lack insurance, affordability, fear result. The maximal benefits screening will only realized adherence preventive Important factors ensure receive include comprehensive monitoring program includes reminder prompts, increased