Understanding the needs of people using a cancer information service in Northern Ireland.

Abstract

A retrospective analysis of first-time enquirers using a cancer information service in Belfast, Northern Ireland, is presented. Our results show that women are three times more likely to use the service than men, with relatives and friends more likely to seek information on behalf of cancer patients than patients themselves. Unlike patients with cancer at other sites, the number of enquiries from breast cancer patients [standard incidence rate (SIR) = 1.5] was greater than incidence figures for the general population would suggest. Individuals without a cancer diagnosis but with potentially cancer-related symptoms accounted for 30% of all enquiries. Breast changes accounted for 49% of calls, testicular abnormalities 19% and concerns about cervical smear test results 13%; prostate problems (12%) and changes in skin pigmentation were the other main sources of caller concern. Our results also demonstrate that cancer patients often have a poor understanding of commonly used medical terms. This analysis shows that individuals using a cancer information service are not representative of the population that develops the disease, highlights how media campaigns can encourage the awareness and reporting of new and pre-existing symptoms, and exposes some of the confusion and misconceptions about cancer that are experienced by sections of the Irish population.