Information support for cancer survivors

Abstract

Survivors' information-seeking behavior has traditionally been documented through analysis of inquiries to hotlines and cancer information services. Data from these self-selected inquiries tend to be restricted to a time around diagnosis, and to those populations possessing the wherewithal and motivation to seek information actively. The current study used data from a general population survey to assess 1) the prevalence of information-seeking behavior among survivors in the general population, 2) characteristics of seekers versus nonseekers, 3) ratings of information-seeking experience, and 4) actual versus preferred sources of information. Data were analyzed from the 2005 administration of the Health Information National Trends Survey (HINTS). HINTS is a cross-sectional, random digit dial telephone survey, weighted to provide estimates for the general population. Nearly half of all Americans (48.7%) indicated that they have looked for cancer information from 1 source or another. Percentages were highest for those who have been touched by cancer (63.1% of cancer survivors and 54.6% of those with family histories) and lowest for those with no cancer history (27.6% of those with no history). Quality concerns topped the list of information-seeking experiences for those recalling the last time they looked. Patterns of information-seeking revealed a discrepancy between preferred and actual source when tracked over years since diagnosis. Information-seeking is prevalent among cancer survivors and does not diminish over time. Prescriptions are given for reengineering the information environment to improve long-term outcomes for survivors.