Factors Impacting the Decision of an Individual With Lynch Syndrome to Terminate a Health Care Provider Relationship

Abstract

Lynch syndrome (LS) is a genetic cancer syndrome that puts affected individuals at a significantly higher risk of developing multiple cancers. Participants (n = 57) were recruited through social media. Data were collected through online surveys and phone interviews; the interview data (n = 55) were analyzed to identify provider terminations and the factors that motivated these decisions. Results indicate that individuals with LS terminated their patient–provider relationships due to lack of provider LS knowledge, poor interactions, or a combination of both factors. Findings from this study suggest a need for better interactions between LS patients and providers and increased knowledge of LS-specific care.