Cancer prognosis information-seeking among survivors and caregivers: findings from the National Cancer Institute’s Cancer Information Service

Purpose Receiving prognostic information is a well-documented need for cancer survivors and caregivers. However, little is known about these two groups’ prognosis information-seeking outside of discussions with healthcare providers. This study examined survivors’ and caregivers’ prognosis-related inquiries using data from the National Cancer Institute’s Cancer Information Service (CIS). Methods Using an analytic sample of 81,154 survivors and caregivers, descriptive statistics explored differences between prognosis and non-prognosis inquiries made by each group over a 6-year period (September 2018–August 2024). Logistic regressions identified factors that were associated with odds of a prognosis inquiry among both cancer survivors and caregivers. Results A higher proportion of caregivers (62%) made prognosis inquiries to the CIS compared to survivors (38%). Among both groups, telephone and instant chat were commonly used to contact the CIS with prognosis questions. Prognosis inquiries were more likely among survivors and caregivers who contacted the CIS in Spanish and whose inquiries centered on staging, post-treatment, or end-of-life phases of the cancer continuum. For both groups, prognosis inquiries were more likely to occur in the context of discussions about chemotherapy and general questions about cancer treatment. Discussion of prognosis as related to specific cancer sites was variable across survivors and caregivers. Conclusion Findings may inform the development and targeting of messages to support cancer prognosis information-seeking among survivors and caregivers. Disseminating accessible, language-concordant prognostic information that accounts for survivors’ and caregivers’ respective information-seeking needs is merited. Efforts may contribute to enhancing prognostic understanding, supporting discussions with providers, and improving psychosocial outcomes.