Personalised risk communication for informed decision making about taking screening tests
Screening is generally considered to be an effective diagnostic tool and method for early detection of disease. Many tests and procedures are classified as belonging to screening programmes, and screening programmes are generally employed to distinguish apparently well persons who probably have a disease from those who probably do not. They may only highlight a risk of disease, and are not intended to diagnose a disease or condition definitively in and of themselves.
Effective screening programmes provide benefits for some of the people who are screened; for example, they can help detect cancer early, facilitating successful treatment. They may also, however, be harmful to people with no significant disease by leading to unnecessary treatments and anxiety. An individual considering a screening test has no way of knowing if they are in the group that will be helped or harmed. Therefore, most healthcare practitioners feel that it is important to provide patients with information about screening tests in a way that will allow them to make a decision about whether to undergo screening that is consistent with their own situation, preferences and personal values.
Personalised, or ‘tailored’, health communication refers to providing information to someone based on characteristics that are unique to that person. Tailoring could address characteristics such as the person’s educational background, cultural orientation, and general level of comprehension or more specific health risk factors such as family history, smoking or diet history. Evidence suggests that the format in which risk information is presented affects patients’ understanding and perception of risk. It is assumed that tailored messages are perceived as more relevant to an individual, and are therefore better processed and understood. However, understanding is still limited about how best to present and discuss risks and benefits of health care in general, and screening in particular, for individuals.
A team of Cochrane Review authors, working with the Consumers and Communication Review Group, set out to determine whether, and how, this approach of providing personalised risk information affected patient decision-making about screening. They sought randomised controlled trials incorporating an intervention with a 'personalised risk communication element’ for individuals undergoing screening procedures, and which reported measures of informed decisions or cognitive, affective, or behavioural outcomes from decision by such individuals, of whether or not to undergo screening. For this update of the Cochrane Review (published in 2005 and 2008), they identified 19 new studies, bringing the total which met these criteria to 41, involving a total of 28,700 people. Most participants were candidates for breast or colorectal cancer screening.
From three trials specifically measuring ‘informed choice’ as an outcome, the researchers found that when risk profiles were included in the intervention, the participants made more informed decisions about screening, compared to people who were provided with more general risk information. Overall 45.2% (592/1309) of participants who received personalised risk information made informed choices, as compared to 20.2% (229/1135) of participants who received generic risk information. An ‘informed decision’ was considered as one that was consistent between knowledge, attitude and choice.
“There is strong evidence from these three trials that incorporating personalised risk estimates into communications about screening programmes can enhance informed decision-making by patients,” said lead Cochrane Review author Adrian Edwards of the Cochrane Institute of Primary Care and Public Health at Cardiff University in Cardiff, Wales. “However, we need to be careful about generalising from these results, which are drawn largely from studies in breast and colorectal cancer screening.”
The research team also notes that data from this review included a diverse range of screening programmes, and that therefore, conclusions could not yet be drawn about how best to deliver personalised risk communication for enhancing informed decisions in specific screening programmes.