Preferences for in‐person disclosure: Patients declining telephone disclosure characteristics and outcomes in the multicenter Communication Of GENetic Test Results by Telephone study

Abstract

Telephone disclosure of cancer genetic test results is noninferior to in‐person disclosure. However, how patients who prefer in‐person communication of results differ from those who agree to telephone disclosure is unclear but important when considering delivery models for genetic medicine. Patients undergoing cancer genetic testing were recruited to a multicenter, randomized, noninferiority trial (NCT01736345) comparing telephone to in‐person disclosure of genetic test results. We evaluated preferences for in‐person disclosure, factors associated with this preference and outcomes compared to those who agreed to randomization. Among 1178 enrolled patients, 208 (18%) declined randomization, largely given a preference for in‐person disclosure. These patients were more likely to be older (P = 0.007) and to have had multigene panel testing (P < 0.001). General anxiety (P = 0.007), state anxiety (P = 0.008), depression (P = 0.011), cancer‐specific distress (P = 0.021) and uncertainty (P = 0.03) were higher after pretest counseling. After disclosure of results, they also had higher general anxiety (P = 0.003), depression (P = 0.002) and cancer‐specific distress (P = 0.043). While telephone disclosure is a reasonable alternative to in‐person disclosure in most patients, some patients have a strong preference for in‐person communication. Patient age, distress and complexity of testing are important factors to consider and requests for in‐person disclosure should be honored when possible.

Knowledge and psychosocial impact of genetic counseling and multigene panel testing among individuals with ovarian cancer

“…In a survey of 339 individuals who underwent BRCA testing, O'Shea and colleagues [31] found that participants perceived that face-to-face results disclosure facilitated information exchange and provision of emotional support. Likewise, Beri and colleagues [32] evaluated factors associated with preference for inperson result disclosure. They found that individuals who opted for in-person disclosure were more likely to be older and more likely to be undergoing multigene panel testing.…”

Pre-injury Comorbidities Are Associated With Functional Impairment and Post-concussive Symptoms at 3- and 6-Months After Mild Traumatic Brain Injury: A TRACK-TBI Study

“…Patient recruitment is limited to Level I trauma centers capturing a more urbanized population, and thus our findings cannot be extrapolated to all mTBI patients. Proportions of telephone vs. in-person follow-ups, which have been shown to influence extent of disclosure in cancer and genetics studies (42), were unavailable from our dataset and constitutes another limitation. This is a study of association, hence we are unable to make claims regarding causality or pathophysiology.…”

Patients’ and professionals’ perspective of non-in-person visits in hereditary cancer: predictors and impact of the COVID-19 pandemic

“…This reluctance is not consistent with other studies, such as the one carried out in a US population, where the majority of patients (82%) agreed to be randomized to in-person versus telephone-based results visits. 17 Cultural background and physical proximity to the public health-care system may explain these differences.…”

“…In addition to substantial physical distance, traditional predictors of non-in-person visits were age and disclosure of multiplex panel testing results. 17 In our work, we hypothesized that other individual features, such as the personality traits of the person undergoing germline genetic testing, could be relevant in predicting the acceptance of non-in-person visits.…”