Fear and Medical Misinformation Regarding Risk of Progression or Recurrence Among Patients with Breast Cancer

Importance Misinformation about cancer treatment is increasingly common. It is not known whether exposure to such misinformation is related to fear of cancer recurrence or adherence to evidence-based treatment. Objective To evaluate exposure to misinformation among adults with a history of breast cancer and assess its association with recurrence fears and treatment adherence. Design, Settings, and Participants In this survey study, a patient-facing online survey was administered by Breastcancer.org from July to August 2023. Eligible participants were adult US residents who received a breast cancer diagnosis within the past 10 years. Surveys assessed patient exposure to non–evidence-based factors purported to affect cancer progression or recurrence risk (ie, misinformation). Main Outcomes and Measures Survey answers on misinformation. Secondary outcomes included recurrence fears, which were evaluated through the validated Fear of Cancer Recurrence Inventory-Short Form (scored on a 0-36 scale, with scores of 22 or higher indicating clinical relevance); χ 2 tests assessed the association between misinformation exposure and both fear of recurrence and treatment adherence. Results A total of 997 patients completed the survey (median [IQR] age, 62 [53-69] years; 48 Black [5%], 43 Hispanic [4%], 853 White [86%]; 748 married [75%] and 765 with college education [78%]). Five hundred twenty patients (52%) were undergoing active cancer treatment. A total of 761 participants (76%) reported encountering misinformation about breast cancer; 651 (65%) reported misinformation exposure about factors that increase the risk of cancer progression or recurrence (eg, sugar, deodorant, cell phones, vaccines). Misinformation exposure about factors that decrease risk (eg, organic food, vitamins or supplements, and alkaline diets) were reported by 542 (54%). The median (IQR) fear of cancer recurrence score was 19 (13-24), with 262 participants (38%) reporting clinically significant fear. Self-reported treatment adherence was 76% overall (758 participants). Misinformation exposure was not associated with clinically significant fear of recurrence (38% vs 35%; χ 2 = 0.53; P = .47) or treatment nonadherence (23% vs 26%; χ 2 = 0.90; P = .34). On multivariable analysis of sociodemographic features, patients of Hispanic ethnicity had higher odds of misinformation exposure (adjusted odds ratio, 2.96; 95% CI, 1.15-10.05; P = .04), although this association did not persist on multivariable analysis including fear of recurrence and treatment adherence. Conclusions In this survey study of patients with breast cancer, exposure to medical misinformation was common, underscoring the need for better survivorship communication with patients; fear of recurrence was not associated with exposure to misinformation. Further research on how patients process medical misinformation is essential, especially in populations at highest risk for misinformation spread.