Unmet Information Needs and Information Seeking Challenges: Findings from a LIVESTRONG National Survey of Cancer Survivors and Their Loved Ones

Authors:

Katherine Treiman (Presenter)
Center for Communication Science, RTI International

Linda Squiers, Center for Communication Science, RTI International
Stephanie Nutt, LIVESTRONG Foundation
Ruth Rechis, MD Anderson
Aditi Narayan, LIVESTRONG Foundation

Public Health Statement: Individuals diagnosed with cancer (survivors) and their loved ones need up-to-date and trustworthy information to make informed decisions, manage their condition, and improve their quality of life.

Purpose: To assess survivors’ and loved ones’ information needs, challenges in information seeking, and areas of unmet information needs.

Methods/Approach: 1811 survivors and 879 loved ones (most were spouse or parent) completed a Web-based survey in 2015. LIVESTRONG recruited participants via social media, partner organizations, and constituent lists.

Results: Survivors were most likely to seek information about treatment options (36%), side effects (35%), and late effects (26%). Loved ones were also most likely to seek information about treatment options (51%), followed by information about diagnosis (39%) and side effects (28%). Of respondents who received information about a topic, survivors were most likely to report their information needs were met related to where to go for care (40%), diagnosis (39%), and connecting with other patients (38%); they were least likely to report their information needs were met related to paying for care (11%), fertility (9%), and employment issues (4%). Asked about recent information seeking, 49% of survivors and 56% of loved ones agreed it took a lot of effort; 47% of survivors and 51% of loved ones agreed it was frustrating; and 39% of survivors and 46% of loved ones agreed the information was difficult to understand.

Conclusions/Implications: Communication interventions are needed to ensure that survivors and loved ones can readily access easy-to-understand information about a range of cancer-related topics.