Informed choice in screening programmes: Do leaflets help? A critical literature review

Screening programmes aim to maximisepopulation benefit by maximizing uptake but must also allow informed choice about participation. Many programmes provide potential participants with information leaflets. This article reviews studies of the effectiveness of leaflets in promoting informed choice in screening. Methods I searched 15 electronic databases and the websites of UK screening programmes, searched the bibliographies of identified studies and contacted experts in the field. Randomized controlled trials (RCTs) and controlled clinical trials where an attempt had been made to determine the contribution of leaflets to the exercise of informed choice in screening decisions were included. Results I identified nine trials from various screening programmes. Outcome measures included knowledge, attitudes to screening, intention to be screened, uptake, anxiety, satisfaction with decision-making, discussions about screening with care providers and agreement that enough information had been provided to allow informed choice. Most studies demonstrated that providing written information increased knowledge, but evidence that this promoted informed choice was poor. Conclusions Research into informed choice in screening is hampered by the lack of agreement about its definition and measurement. The most effective way for screening programmes to achieve informed choice is unclear. Programmes should not rely solely on providing written information but should explore additional ways to promote informed choice.