Review and special articles
Promoting informed decisions about cancer screening in communities and healthcare systems

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Abstract

Individuals are increasingly involved in decisions about their health care. Shared decision making (SDM), an intervention in the clinical setting in which patients and providers collaborate in decision making, is an important approach for informing patients and involving them in their health care. However, SDM cannot bear the entire burden for informing and involving individuals. Population-oriented interventions to promote informed decision making (IDM) should also be explored.

This review provides a conceptual background for population-oriented interventions to promote informed decisions (IDM interventions), followed by a systematic review of studies of IDM interventions to promote cancer screening. This review specifically asked whether IDM interventions (1) promote understanding of cancer screening, (2) facilitate participation in decision making about cancer screening at a level that is comfortable for individuals; or (3) encourage individuals to make cancer-screening decisions that are consistent with their preferences and values.

Fifteen intervention arms met the intervention definition. They used small media, counseling, small-group education, provider-oriented strategies, or combinations of these to promote IDM. The interventions were generally consistent in improving individuals' knowledge about the disease, accuracy of risk perceptions, or knowledge and beliefs about the pros and cons of screening and treatment options. However, few studies evaluated whether these interventions resulted in individuals participating in decision making at a desirable level, or whether they led to decisions that were consistent with individuals' values and preferences.

More research is needed on how best to promote and facilitate individuals' participation in health care. Work is especially needed on how to facilitate participation at a level desired by individuals, how to promote decisions by patients that are consistent with their preferences and values, how to perform effective and cost-effective IDM interventions for healthcare systems and providers and in community settings (outside of clinical settings), and how to implement these interventions in diverse populations (such as populations that are older, nonwhite, or disadvantaged). Finally, work is needed on the presence and magnitude of barriers to and harms of IDM interventions and how they might be avoided.

Introduction

The growing interest in patient education, patient–provider communication, and patient satisfaction with healthcare decision making is reflected in Healthy People 2010,1 the nation's health agenda (Table 1). Along with this growing interest, a number of trends are contributing to increased involvement of individuals in making decisions about their health care. These trends include a growing emphasis on informed choice by consumers; more patient involvement in healthcare decisions2; greater quality and availability of rigorous, state-of-the-science information on clinical options, including their pros and cons; increased understanding among both consumers and practitioners that many clinical decisions are not “one size fits all” and need to be sensitive to individual values3, 4, 5; and less paternalism in provider–patient interactions.6, 7

Some argue that information provided about screening tests and other healthcare procedures may be unbalanced and that better data should be provided about what a patient can expect, including any potential harms and limitations. On the other hand, direct marketing of healthcare products and services to consumers is increasingly common, and often takes place regardless of whether scientific consensus on effectiveness has been reached. Societal trends also support greater public involvement in interpreting scientific findings and developing science policy.8 In addition to these healthcare, marketing, and societal trends, the relationship between individual involvement in clinical decision making and healthcare quality has been addressed by the Institute of Medicine; the Institute's position is that quality health care should be patient centered—that is, respectful of and responsive to patient needs and values.9

The review team (the team) defined informed decision making (IDM) as occurring when an individual understands the nature of the disease or condition being addressed; understands the clinical service and its likely consequences, including risks, limitations, benefits, alternatives, and uncertainties; has considered his or her preferences as appropriate; has participated in decision making at a personally desirable level; and either makes a decision consistent with his or her preferences and values or elects to defer a decision to a later time. Based on the work of the U.S. Preventive Services Task Force (USPSTF), the team defined shared decision making (SDM) as occurring when a patient and his or her healthcare provider(s), in the clinical setting, both express preferences and participate in making treatment decisions. The team defined an IDM intervention as any intervention in a community or healthcare system that promotes IDM. IDM interventions, including SDM in the clinical setting, are emerging concepts that may increase the involvement of individuals in decision making about their health care.

This confluence of national trends raises several questions addressed in this paper:

  • 1.

    What are IDM and SDM, and how do they relate to one another?

  • 2.

    Is there a need for IDM to complement SDM?

  • 3.

    Can interventions effectively promote IDM and SDM?

  • 4.

    What are the pros, cons, and tradeoffs involved in IDM and SDM interventions?

  • 5.

    What is known about the use of IDM interventions for cancer-screening decisions?

  • 6.

    What types of cancer-screening decisions could be addressed through IDM and SDM interventions?

  • 7.

    What outcomes are likely to result from IDM or SDM interventions?

  • 8.

    What additional research is needed?

To answer these questions, the team developed a conceptual framework for IDM and SDM interventions showing the relationship between these interventions and key outcomes (Figure 1). Using this framework, the team conducted a systematic literature review to assess whether IDM interventions in one subject area—cancer screening—have been effective in achieving these outcomes. Development of the conceptual framework and the systematic literature review were conducted as part of the larger Guide to Community Preventive Services initiative (more at www.thecommunityguide.org); the framework and review provide the basis for conclusions by the Task Force on Community Preventive Services.

The systematic reviews in this report represent the work of the independent, nonfederal Task Force on Community Preventive Services (the Task Force). The Task Force is developing the Guide to Community Preventive Services (the Community Guide) with the support of the U.S. Department of Health and Human Services, in collaboration with public and private partners. The Centers for Disease Control and Prevention (CDC) provides staff support to the Task Force for development of the Community Guide. A special supplement to the American Journal of Preventive Medicine, “Introducing the Guide to Community Preventive Services: Methods, First Recommendations, and Expert Commentary,” published in January 2000,10 presented the background and the methods used in developing the Community Guide (articles are also available at www.thecommunityguide.org).

Section snippets

IDM and SDM: how do they relate to each other?

Various authors have different conceptions and nomenclature for IDM, SDM, and related interventions. In proposing nomenclature for this review, the team has benefited considerably from the work of others4, 7, 11, 12, 13, 14, 15 and has collaborated closely with the USPSTF.16 In addition, the development of IDM and SDM interventions is predicated on basic research, including decision analysis7, 17, 18, 19 and risk communication.20 The team incorporated ideas from such research when defining

Systematic review of IDM and cancer screening: rationale

As part of the Guide to Community Preventive Services, a systematic review of IDM for cancer screening was conducted to help further explore the extent to which IDM interventions have been tested in this area and assess the extent to which the potential outcomes have been evaluated empirically. This inquiry was limited to IDM outside of the individual clinical encounter (i.e., excluding SDM) and to prevention and early detection (SDM is evaluated by the USPSTF elsewhere in this issue16).

IDM is

Methods

The general methods used to conduct systematic reviews for the Community Guide have been described in detail elsewhere.39, 40 The specific methods for conducting this review, including intervention selection, outcome determinations, and search strategy, are presented in the Appendix.

Effectiveness

Eleven reports met the inclusion criteria (Table 3). Three of the reports13, 41, 42 provided data on more than one intervention arm. Therefore, a total of 15 independent intervention arms were identified for the review. Of the 15 included intervention arms, ten addressed prostate cancer screening,41, 42, 43, 45, 46, 47, 49, 50 three addressed colorectal cancer screening,38, 44, 48 and two (in one report) addressed mammography screening.13

Only three of the intervention arms13, 49 evaluated

Conclusions

According to Community Guide rules of evidence,39 current evidence is insufficient to determine the effectiveness of IDM interventions for individuals in healthcare settings, for community members outside of healthcare settings, or for interventions targeted to healthcare systems and providers. Although there was generally consistent evidence that these interventions improved knowledge, beliefs, risk perceptions, or a combination of these (e.g., knowledge about the disease, the test or the

Acknowledgements

We appreciate the efforts of our consultants: Ross Brownson, PhD, St. Louis University, St. Louis MO; Robert Burack, MD, MPH, Wayne State University, Detroit MI; Linda Burhansstipanov, DrPH, Native American Cancer Research, Pine CO; Allen J. Dietrich, MD, Dartmouth Medical School, Hanover NH; Russell Harris, MD, MPH, University of North Carolina, Chapel Hill NC; Thomas Koepsell, MD, MPH, University of Washington, Seattle WA; Howard K. Koh, MD, MPH, Massachusetts Department of Public Health,

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    The names and affiliations of the Task Force members are listed at www.thecommunityguide.org.

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