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

摘要

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