Patients' ability to make genuinely informed choices about undergoing disease screening increases when the risk information that they receive is related to their own personal risk, rather than average risks, according to the results of a Cochrane systematic review. The authors reviewed data from studies, largely on cancer screens, in which patients were provided with personalised risk estimates.
The benefits of screening are not clear-cut. For example, screening can help detect cancer early, leading to successful treatment, but it can also lead to unnecessary treatment and anxiety either in healthy people or in those who would never have become seriously ill. Therefore, many health care providers are interested in finding approaches that help each patient make an informed decision about whether they want to have a screening test, instead of simply encouraging all patients to undergo screening. It is thought that risk information tailored to individuals, depending on factors including age and behaviours such as smoking, may be better understood by patients than information based on average risks.
The researchers wanted to know whether this approach of providing personalised risk information could enhance patient decision-making. They analysed data from 41 studies involving a total of 28,700 people. Most participants were candidates for breast or colorectal cancer screening. Patients were given personalised risk information to help them make informed decisions about screening tests. Some received this information in the form of numerical scores or risk levels (low, medium or high), while others received simple lists of risk factors that were personally relevant to them.
Data from three of the studies showed that 45% of those who received personalised risk information made informed choices, compared to 20% in a control group 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 researcher 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."
Most high-risk patients opted to take the tests. Overall, however, patients who were given more detailed personalised risk information were less likely to take screening tests. According to the researchers, informed decision-making may need to be incorporated into health objectives to ensure that health goals are not compromised.
"For the healthcare provider, it may be satisfactory to have had a discussion with a patient about the pros and cons of screening for cervical cancer, even if she decides not to undergo screening," said Edwards. "If this outcome was considered as 'adherent to health guidelines', then improvements in care could be achieved without falling foul of requirements for governance, audit, and payment targets."
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Edwards AGK, Naik G, Ahmed H, Elwyn GJ, Pickles T, Hood K, Playle R. Personalised risk communication for informed decision making about taking screening tests. Cochrane Database of Systematic Reviews 2013, Issue 2. Art. No.: CD001865. DOI: 10.1002/14651858.CD001865.pub3