Personalised risk communication for informed decision making about entering screening programs

  • Review
  • Intervention

Authors

  • A Edwards,

  • S Unigwe,

  • G Elwyn,

  • K Hood


Prof Adrian Edwards, Research Professor in General Practice, Dept of General Practice, Centre for Health Services Research, Cardiff University, 2nd Floor, Neuadd Meirionnydd, Heath Park, Cardiff, Wales, CF14 4XN, UK. adriangkedwards@btinternet.com.

Abstract

Background

There is a trend towards greater patient involvement in health care decisions. Adequate discussion of the risks and benefits associated with different choices is often required if involvement is to be genuine and effective. Achieving adequate involvement of consumers and informed decision making are now seen as important goals for any screening programme. Individualised risk estimates have been shown to be effective methods of risk communication in general, but the effectiveness of different strategies has not previously been examined.

Objectives

To assess the effects of different types of individualised risk communication for consumers making decisions about participating in screening.

Search strategy

We searched the Cochrane Consumers and Communication Review Group specialised register (searched March 2001), MEDLINE (1985 to 2001), EMBASE (1985 to 2001), CancerLit (1985 to 2001), CINAHL (1985 to 2001), ClinPSYC (1989 to 2001), and the Science Citation Index Expanded (searched March 2002). Follow-up searches involved hand searching Preventive Medicine, citation searches on seven authors, and searching reference lists of articles.

Selection criteria

Randomised controlled trials addressing the decision by consumers of whether or not to undergo screening, incorporating an intervention with a 'personalised risk communication element' and reporting cognitive, affective, or behavioural outcomes. A 'personalised risk communication element' is based on the individual's own risk factors for a condition (such as age or family history). It may be calculated from an individual's risk factors using formulae derived from epidemiological data, and presented as an absolute risk or as a risk score, or it may be categorised into, for example, high, medium or low risk groups. It may be less detailed still, involving a listing, for example, of a consumer's risk factors as a focus for discussion and intervention.

Data collection and analysis

Two reviewers independently assessed trial quality and extracted data. Data about the nature and setting of the intervention, and the relevant outcome data were extracted, along with items relating to methodological quality.

Main results

Thirteen studies were included. Personalised risk communication (whether written, spoken or visually presented) was associated with increased uptake of screening tests (odds ratio (OR) 1.5 (95% confidence interval (CI) 1.11 to 2.03). There was no evidence from these studies that this increase in uptake of tests was related to informed decision making by consumers. More detailed personalised risk communication was associated with a smaller increase in uptake of tests. That is, for personalised risk communication which used and presented numerical calculations of risk, the OR for test uptake was 1.22 (95% CI 0.56 to 2.68). For risk estimates or calculations which were categorised into high, medium or low strata of risk, the OR was 1.42 (95% CI 1.07 to 1.88). For risk communication that simply listed risk personal risk factors the OR was 1.7 (95% CI 1.17 to 2.48).

Most of the included studies addressed mammography programmes. These studies showed slightly smaller effects than the overall dataset, again with numerical calculated risk estimates being associated with lower ORs for uptake of tests (OR 1.13; 95% CI 0.98 to 1.29) than the other categories of (less detailed) personalised risk communication. The four studies examining risk communication in high risk individuals showed larger odds ratios for uptake of tests than the other studies. The OR for numerical calculated risk estimates was 1.48 (95% CI 1.06 to 2.07), compared to 4.66 (95% CI 2.24 to 9.69) for categorised risk estimates and 2.64 (95% CI 1.42 to 4.9) for listed personal risk factors.

There were insufficient data from the included studies to report odds ratios on other key outcomes such as: intention to take tests, anxiety, satisfaction with decisions, decisional conflict, knowledge and risk perception.

Authors' conclusions

Personalised risk communication (as currently implemented in the included studies) is associated with increased uptake of screening programmes, but this may not be interpretable as evidence of informed decision making by consumers.

Plain language summary

Plain language summary

Individualised risk information increases the rate of participation in screening programs, but there is not enough evidence to show if it enhances informed decision making

Screening programs aim to identify people who may have a particular disease or condition. People considering participation in screening may receive information about the general risk of having the disease or condition, or information that is tailored to their personal risk status (individualised risk information). This review of trials found that people given individualised risk information are more likely to participate in screening. However, there is not enough evidence to show whether people given individualised risk information are making more informed decisions. Providing risk information in ways that better inform people may sometimes lead to lower participation rates in screening.

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