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Cancer Screening: Promoting Informed Decision Making for Cancer Screening


What the CPSTF Found

About The Systematic Review

The CPSTF finding is based on evidence from a systematic review of 11 studies (search period 1966 - 2002). The review was conducted on behalf of the CPSTF by a team of specialists in systematic review methods, and in research, practice, and policy related to cancer prevention and control.

Summary of Results

Detailed results from the systematic review are available in the CPSTF finding pdf icon [PDF - 125 KB].

Eleven studies qualified for the systematic review.

There was generally consistent evidence that IDM interventions improve:

  • Knowledge
  • Accuracy of beliefs
  • Risk perceptions
  • A combination of these

However, there was little or no evidence about whether these interventions:

  • Result in individuals participating in decision making at a level they desire
  • Result in decisions that are consistent with individual values and preferences
  • Affect screening rates, especially among high-risk populations (e.g., older, non-white, low-income)

Summary of Economic Evidence

An economic review of this intervention was not conducted because the CPSTF did not have enough information to determine if the intervention works.


Applicability of this intervention across different settings and populations was not assessed because the CPSTF did not have enough information to determine if the intervention works.

Evidence Gaps

The CPSTF identified several areas that have limited information. Additional research and evaluation could help fill remaining gaps in the evidence base. (What are evidence gaps?)

Results from the Community Guide review indicate that there were not enough studies to determine the effectiveness of informed decision making (IDM). Thus, numerous research issues remain.

More work is needed on the effect of these interventions on all of the outcomes in the conceptual framework, especially on recommendation outcomes other than knowledge, beliefs, and perceptions of risk. Few studies reported individuals' participation in decision making, and only one of those reported whether participation was at a desired level. It is not possible to know from the published reports whether questions about this issue were not asked or whether current instruments are not sufficiently sensitive to discriminate different levels of patient interest in participation, causing investigators not to report the data. If the problem is the latter, more sensitive measures of patient desire for participation should be developed.

The medical decision-making field has given considerable attention to assessing patient preferences for health states—that is, the quality of life in a particular health situation. Health economists call these preferences “utilities” and use them, among other purposes, to inform cost-utility analyses. This research needs, however, to be extended to accurate and feasible ways to assess preferences in clinical encounters and to ensure that patient decisions are congruent with individual preferences and values.

Because most of the included studies in this review addressed prostate cancer, additional work on other cancer screenings would be welcome. Additional studies are needed in community contexts outside of clinical settings. Similarly, studies are needed that focus on providers and healthcare systems to promote shared decision making (SDM) instead of, or in addition to, directly targeting individuals. Studies with providers and in healthcare systems should measure provider and system outcomes, but should also measure the client outcomes that are the ultimate goal of these programs and policies.

Social and demographic variables have been shown to affect individuals' desire for involvement in healthcare decisions and may also affect the effectiveness of IDM interventions. To date, IDM seems to be more acceptable to younger and more educated patients. However, this may be a consequence both of how questions are asked and of patients' confidence. More empirical work is needed in diverse populations, such as nonwhite, older, and medically underserved populations. Achieving IDM in such populations is a challenging but desirable goal.

Although the study designs and executions of available studies in this review were generally strong, some measurement issues need additional attention. Sensitive, appropriate measures are still needed of individual involvement in decision making and the match between decisions and preferences or values. In addition, work is needed on how best to elicit patient preferences and respond to them in nonthreatening, time-sensitive, and culturally appropriate ways.

Although much work has already been published in the risk communication literature about how to communicate complex information involving probabilities to individuals, additional work is still needed on appropriate and feasible ways of communicating technical information so that it is helpful and not overwhelming. Additional empirical work on people's information needs and preferences for level of involvement in decision making, how those needs and preferences might evolve over time, and how best to meet those needs and preferences would also be useful. Finally, more work is needed on whether IDM or SDM increases or decreases the use of effective services.

It is known that, at least for some diseases (e.g., breast cancer), individuals overestimate both the disease risks and the benefits of screening. IDM could help patients achieve a more realistic perspective on risks and benefits. In particular, quantitative risk models, which clearly show patients the risks and benefits of screening in terms of their personal characteristics, would allow patients to take personal risk factors into account when making healthcare decisions. Such techniques, which permit individualization of the risks and benefits, might help people to make better-informed decisions.

Study Characteristics

  • Of the 15 included intervention arms, ten addressed prostate cancer screening, three addressed colorectal cancer screening, and two addressed mammography screening.
  • Only three of the intervention arms evaluated interventions implemented outside of clinical settings, and only one study included an intervention component oriented to providers or healthcare systems.
  • Thirteen intervention arms measured patients’ knowledge, beliefs, or perceptions about the risk or natural history of the disease, or about the performance of the preventive service.