Characterizing informational needs and information seeking behavior of patients with breast cancer

Background: Appropriate information may facilitate adjustment to cancer diagnoses. Our study aims to characterize informational satisfaction in breast cancer patients and assess resources used by patients to gain information.

Methods: Newly diagnosed Stage 0-III breast cancer patients seen at an academic medical center between May and September 2020 received questionnaires assessing information satisfaction. Patients indicated resources used to obtain information along with satisfaction with information received in various topics. A subset of questionnaire respondents completed semi-structured interviews.

Results: Fifty-two (35 ​%) patients completed the questionnaire. Patients received information from physicians (96 ​%), the internet (81 ​%), nurses (79 ​%), and fellow breast cancer patients (54 ​%). Interview participants preferred receiving information from providers when making medical decisions but found patient forums and social media to be important adjuncts for receiving information.

Conclusion: Patients are satisfied with information received about diagnosis and treatment, but finances, sexual health, and fertility are less frequently discussed.