Understanding cancer survivors’ information needs and information-seeking behaviors for complementary and alternative medicine from short- to long-term survival: a mixed-methods study

OBJECTIVE: The research examined complementary and alternative medicine (CAM) information-seeking behaviors and preferences from short- to long-term cancer survival, including goals, motivations, and information sources. METHODS: A mixed-methods approach was used with cancer survivors from the “Assessment of Patients’ Experience with Cancer Care” 2004 cohort. Data collection included a mail survey and phone interviews using the critical incident technique (CIT). RESULTS: Seventy survivors from the 2004 study responded to the survey, and eight participated in the CIT interviews. Quantitative results showed that CAM usage did not change significantly between 2004 and 2015. The following themes emerged from the CIT: families’ and friends’ provision of the initial introduction to a CAM, use of CAM to manage the emotional and psychological impact of cancer, utilization of trained CAM practitioners, and online resources as a prominent source for CAM information. The majority of participants expressed an interest in an online information-sharing portal for CAM. CONCLUSION: Patients continue to use CAM well into long-term cancer survivorship. Finding trustworthy sources for information on CAM presents many challenges such as reliability of source, conflicting information on efficacy, and unknown interactions with conventional medications. Study participants expressed interest in an online portal to meet these needs through patient testimonials and linkage of claims to the scientific literature. Such a portal could also aid medical librarians and clinicians in locating and evaluating CAM information on behalf of patients.