Patients educating health care providers on Lynch syndrome

Abstract

Objective: Lynch syndrome (LS) patients are at an elevated risk for early-onset cancers, including endometrial and colorectal (CRC). Prior research has shown a deficit in provider knowledge of LS, which may affect patient satisfaction and adherence to recommended screening and surveillance regimens. Studies suggest patients with LS may educate providers perceived as lacking LS knowledge; however, little is known about these interactions. The goal of this study is to assess patient-reported outcomes from clinical interactions where LS patients educate their providers. Methods: Participants (n=55) were asked to complete an in-depth telephone interview. Results: Out of 55 participants, approximately two-thirds (n=37) reported engaging in educational interactions. Participants reported feeling satisfied with the provider response in over half of the reported educational interactions (n=24). Participants reported changes in their patient-provider relationship ranging from improvements in their relationship to termination of services. Conclusion: Patients with LS report educating providers on their diagnosis as well as their screening and surveillance requirements. Patient-reported outcomes of these educational interactions vary based on the provider's response to the interaction. Providers should be open and receptive to these educational interactions and follow-up on the discussion to improve patient satisfaction.

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

“…It is evident that specific knowledge is required for proper care; when this knowledge is not adequate, the patient-provider relationship may be terminated. The considerable overlap between lack of LS knowledge and poor interaction supports the literature stating that a lack of knowledge may lead to patients educating providers or advocating for themselves in a way that is not always appreciated by providers (5). It is possible that some of these poor interactions are due to patients being more aware of their care needs and feeling that a provider is dismissing them.…”

“…Ultimately, both knowledge regarding LS and improvements in patient–provider interactions are things that can be addressed through educational intervention. The literature indicates that provider interventions that improve communication and patient-centered skills may improve patient–provider interactions (5). Since most poor interactions were due to patients feeling dismissed or invalidated, these changes could significantly improve the quality of care for individuals with LS and their satisfaction with that care.…”

“…Individuals have reported educating their providers on LS if they did not feel confident about their providers' LS-specific knowledge. Some patients reported feeling that their provider was not receptive to the information, while others indicated that they were satisfied with the outcome of these provider interactions (5). In some situations, a provider's lack of understanding regarding screening and surveillance procedures as well as a low concern for LS-specific health care needs may lead a patient to terminate their patient-provider relationship.…”