Uncertainty management for individuals with Lynch Syndrome: Identifying and responding to healthcare barriers

Abstract

Objective: Examine the uncertainty management process of individuals with Lynch syndrome (LS).

Methods: 19 phone interviews were conducted with individuals with LS. The interview guide included questions on family communication, risk perceptions, and uncertainty management. Data were analyzed using the constant comparison method to code for emergent themes.

Results: Qualitative analysis found individuals with LS tried to manage their uncertainty through preventive care, but were often confounded by healthcare barriers. Healthcare barriers included cost and insurance issues, absence of coordinated care, insufficient provider knowledge, and lack of patient-centered communication. Participants reported increased uncertainty and anxiety due to these barriers and used alternative uncertainty management strategies such as advocating for themselves with providers, seeking information online, and communicating with family for emotional support.

Conclusion: Healthcare barriers identified in this study exacerbated uncertainty and anxiety for individuals with LS and challenged their ability to engage in preventive care. In response, participants used alternative uncertainty management strategies to reduce their uncertainty, which may have unintended negative consequences.

Practice implications: Findings support the need for providers to partner with specialists in genetics and/or LS to better care for individuals with LS. Findings highlight opportunities for interventions in healthcare to better support individuals with LS.

Keywords: Healthcare barriers; Lynch syndrome; Qualitative; Uncertainty.