An analysis of first-time enquirers to the CancerBACUP information service: variations with cancer site, demographic status and geographical location

A retrospective comparison of cancer incidence data and, where relevant, po pulation data with 16 955 first-time users (patients, relatives and friends ) of a national cancer information service (CancerBACUP) during the period April 1995 to March 1996 is presented. The number of events observed was co mpared with the number of events expected, were the national rates of cance r incidence and population demographics apply. Standardized incidence ratio s (SIRs) (observed - expected ratios) were used to indicate any differences . Statistically significant differences (P< 0.001) in the observed and expe cted sex, age and primary site distribution of patients enquired about were found. Statistically significant differences (P < 0.001) were also identif ied for the age, employment status, socioeconomic class and geographical lo cation of first-time enquirers (patients, relatives and friends). Enquiries about brain, testis and breast cancers and non-Hodgkin's lymphoma (NHL) we re substantially higher than expected; enquiries about bladder, lung, stoma ch and colorectal cancers were much lower than expected. As the service is provided via a freephone number, it is available to all, and users might be expected to be randomly distributed across the variables listed. The under lying reasons for the differences identified need to be investigated, and t he role of information in the care of cancer patients should be formally ev aluated.