Patient perspectives on information and choice in cancer screening: A qualitative study in the UK

Abstract

The principle of informed choice has been recently incorporated into cancer screening policy. However, there is limited empirical or theoretical work on informed choice in this particular context. The main aim of the study reported here was to explore the information needs of people invited for screening, and to gain insights into the relationship between the information they wanted and the choices they made. A qualitative study (nine focus groups and 15 individual interviews) was undertaken with people who had contrasting experiences (and outcomes) of either breast, cervical, or colorectal cancer screening at two locations in Scotland, UK. Findings suggest that lay people define and conceptualise informed choice differently from policy makers. The study also found that information about the disease was as important to people as information on the risks and limitations of screening. However, information may have little part to play in the choices people make. Rather, it may have more impact on outcomes such as satisfaction and anxiety. An explicit policy aim in promoting informed choice is to enhance patient autonomy and to prevent people from being deceived or coerced. However, this research shows that the provision of evidence-based information alone does not necessarily mean that an informed choice is made. People may not read, want, or understand the information, and, additionally, they may not be able to carry out their intended choice. There may be personal barriers, such as physical or mental health problems and language, or organisational barriers, such as the availability of the service/intervention and access. Therefore, the term ‘informed choice’ might not be useful in this context.