Cancer patients' information needs across the cancer care continuum: evidence from the cancer information service

Abstract

This study examines the information needs of cancer patients who contacted the National Cancer Institute's (NCI's) Cancer Information Service (CIS) via a toll-free telephone number. Records from 19,030 calls received from cancer patients between September 2002 and August 2003 were analyzed to determine differences in subjects of interaction (main topics of inquiry and discussion) for subgroups of patients based on demographic characteristics and stage along the cancer care continuum (pretreatment, in-treatment, post-treatment, recurrence). Females were more likely than males to inquire about cancer screening/diagnosis, support services, psychosocial issues, and general cancer site information, but they were less likely to seek specific cancer treatment information. Older patients were more likely than younger patients to seek specific treatment information, but they were less interested in support services, psychosocial issues, and prevention/risk factors. Compared with White callers, Hispanics and most minorities were more likely to seek support service information, and African Americans were more likely to have questions related to psychosocial issues. Compared with patients in treatment, patients in recurrence were more likely to seek specific treatment information; patients not in treatment were more likely to seek medical referral information; and patients in post-treatment were more likely to seek screening/diagnosis and prevention/risk factor information. Findings will help the CIS and other cancer-focused organizations address the distinct information needs of different subsets of cancer patients.