Importance of information-seeking styles among patients with cancer pre- and post-treatment: A URCC NCORP Research Base study.
Authors: Yilmaz Sule , Mohile Supriya Gupta , Adler David , Epstein Ronald M. , Loh Kah Poh , Medina-Walpole Annette , Naik Aanand , Grudzen Corita , Culakova Eva , Sun Hongying , Morrow Gary R. , McGuire Jeremy , Mattick Lindsey Jean , Rieth Katherine , Kadambi Sindhuja G , Clark Viktor , Kinney Michelle , Onitilo Adedayo A. , Wade James L , Peppone Luke Joseph 
Published: June 2024

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Background: Understanding of information needs and information-seeking styles of patients with cancer is critical for shared decision-making and high quality care. Most patients with cancer want to be involved in the decision-making process but have unmet information needs regarding their disease and its treatment. The goal of this study is to 1) identify information needs and 2) investigate factors associated with information-seeking styles pre-and-post treatment among patients with cancer. Methods: This is a secondary data analysis of a longitudinal study of 1003 patients from nine community oncology practices across the United States that assessed information needs of patients with cancer. We recruited patients aged ≥18 years with a newly diagnosed cancer. Patients supplied demographic and clinical information at enrollment; information needs assessment including concerns (score ranging, 0-100) and anticipated side effects (0-60), questions on information-seeking styles (1-item), decision-making preferences (1-item), and resource usage (5-items) were obtained within two weeks pre-and-post treatment. We performed multinomial logistic regression to evaluate the association of information needs including concerns, anticipated side effects, and decision-making preferences with information-seeking styles (active vs. passive) at pre-and-post treatment. The analysis was adjusted for age, gender, race, marital status, education, overall health, and cancer and treatment types. Results: Mean age was 60.5 (SD=13.0) years. Most were White (93.0%), female (64.0%), had some college (54.3%), and were diagnosed with breast cancer (47.0%). The sources of health information included friends (52.7%), pamphlets (60.2%), and experts (75.6%). Of the total, 43.8% reported that they preferred shared decision making but had concerns about understanding the diagnosis (70.2%) and treatment plan (70.7%). On logistic regression, preference for shared decision making (vs. doctor making all decisions; Odds Ratio (OR) pre-treatment=1.87, p=.01; OR post-treatment =2.3, p<.001), taking notes while meeting with doctor (vs. not taking notes; OR pre-treatment =2.2, p<0.001; OR post-treatment =1.8, p=0.01), and information sought that could be useful later (vs. not useful; OR pre-treatment = 1.9, p=.03; OR post-treatment =1.3, p=0.38) were associated with greater odds of active information seeking. Education and cancer type (pre-treatment) and age, cancer, and treatment types (post-treatment) were significantly associated with active information seeking. Conclusions: Shared decision making and taking notes during doctor visits are crucial factors associated with active information seeking. Interventions tailored to meet information needs of these patients may help increase patient participation in healthcare decision making.