Background: Lynch Syndrome (LS) is a hereditary condition that substantially increases a person’s risk of cancer and makes genetic testing for LS critical for organ surveillance or preventive care. A commonly identified barrier to LS genetic testing has been the difficulty in communicating genetic status between family members. Barriers to effective organ surveillance have also been documented and a coordinated approach to LS management has been suggested. However, few studies ask persons with LS to describe their experiences in accessing care and to put forth suggestions to improve access. Although authors have listed some suggestions to improve coordination, a framework for improving access by persons with LS has not been developed.

Methods: Drawing on interpretive description, this qualitative study involved 17 semi structured, in-depth interviews to understand barriers and facilitators to persons with LS accessing care for LS. Thematic analysis of the transcribed interviews entailed a general inductive approach.

Results: Seventeen persons with four of five possible genotypes of LS were recruited from 12 families to represent experiences of accessing care for LS. The analysis identified six themes: It’s health care, not ‘Russian Roulette’; Knowledge; Central force in the family; Personalized approach; Ensuring continuity of care; Need for care coordination. A framework for improving health care access by persons with LS was developed.

Conclusions: Implementing the framework at the health system and clinician levels could improve the uptake of genetic testing, organ surveillance, and quality of care for persons with LS.