Trust in neuroendocrine tumors: The importance of communication in rare and chronic malignancies

75 Background: Trust is an integral component of the physician-patient relationship, and its importance is magnified in oncology. In patients with uncommon cancers, aspects pertaining to the rarity of their diagnosis may further influence their inclination towards and perception of trust. We sought to delineate the existing literature landscape of trust in oncology and explore the meaning of trust for patients living with neuroendocrine tumors (NETs), a comparatively rare and chronic malignancy. Methods: We performed a MEDLINE search including combinations of the MeSH headings ‘trust’ and ‘neoplasms’, categorizing articles according to recurrent themes. These themes were then presented to a Northern California NET support group, followed by a discussion. Discussants’ narratives and lived experiences were evaluated with those captured by the current literature to assess areas of concordance as well as to identify areas in need of further study. Results: 355 articles were reviewed, of which 40 articles were included for analysis. Frequently cited factors contributing to measures of trust consisted of race discordance, empathic physician communication, and healthcare systems dynamics. Medical mistrust was associated with poorer cancer screening compliance, reduced adherence to therapy recommendations, and decreased quality of life. Support group participants’ perspectives affirmed these conclusions, adding the lack of medical community awareness of NETs as the major barrier to communicating with their physicians about symptom recognition and shared decision making. Conclusions: Trust in oncology is determined by factors related to patients, physicians, and the healthcare system in which they interact. Medical mistrust is associated with worse measures of cancer surveillance, treatment adherence, and quality of life. Patients with NETs uniquely implicated the insidious and rare nature of their disease, as well as lack of clinician expertise in community settings, in impairing communication with, and therefore, trust in their physicians. Efforts to improve physician-patient communication in those with rare malignancies are needed in order strengthen trust and optimize their care.