title: 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.
authors.affiliation: Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, Maryland 20892-7365, USA. hesseb@mail.nih.gov
authors.forename: Bradford W
authors.initials: BW
authors.lastname: Hesse
authors.forename: Neeraj K
authors.initials: NK
authors.lastname: Arora
authors.forename: Ellen
authors.initials: E
authors.lastname: Burke Beckjord
authors.forename: Lila J
authors.initials: LJ
authors.lastname: Finney Rutten
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D054626:Consumer Health Information / Q000706:statistics & numerical data*; D003430:Cross-Sectional Studies; D005260:Female; D006306:Health Surveys; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology*; D010342:Patient Acceptance of Health Care / Q000523:psychology / Q000706:statistics & numerical data; D017060:Patient Satisfaction / Q000706:statistics & numerical data; D017741:Survivors / Q000523:psychology* / Q000706:statistics & numerical data*