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.

Keywords

• lynch syndrome
• colorectal cancer
• patient-provider communication
• shared decision making
• patient-centered care