How can screening for life-threatening diseases be harmful?

While many screening tests have improved the quantity and quality of a person’s life through early detection of life-threatening or life-altering diseases, other tests have failed to deliver. These tests may fail to deliver because they are inaccurate, poorly performing, have unavailable treatments, high costs, treatment complications or health providers who are unaware of the screening controversies. Prostate cancer screening with the prostate-specific antigen (PSA) blood test epitomizes this controversy. Prostate cancer accounts for about 29,000 cancer deaths annually in the US, yet millions of men may have undetected prostate cancer—the vast majority of whom will remain asymptomatic throughout their life.1–4 At the population level, prostate cancer treatment has only a marginal mortality benefit. PSA as a screening test has reasonable sensitivity to detect aggressive prostate cancers (91%), but cannot distinguish between low- and high-risk prostate cancers. This results in substantial overdiagnosis (with attendant treatment complications of impotence, incontinence and surgical mortality) of men who would have remained asymptomatic.1–4

For controversial conditions such as prostate cancer screening (PrCS), the medical encounter needs to focus on discussion and education to help patients reach value-concordant decisions.5–11 Value-concordant decision-making can be enhanced using shared decision-making8 techniques to clarify issues. In SDM, medical knowledge (risks, harms and benefits of diagnosis and treatment) is cogently and clearly contextualized through the lens of patient’s values and preferences to elicit a preferred clinical pathway.

Most major professional societies have endorsed SDM for decisions around prostate cancer screening for average-risk men aged 55–75 years old.2,3,12–15 In 2010, the American Cancer Society updated its PrCS recommendations to include an informed decision-making/SDM discussion about screening with the PSA test for all men who had a longer than 10-year life expectancy.15 Until recently, the US Preventive Services Task Force (USPSTF) considered the evidence insufficient to recommend for or against prostate cancer screening in this age range, but they encouraged shared decision-making.3 In 2011, the USPSTF recommended against routine PrCS for average-risk men of all ages.3,16

Yet, balanced discussions between clinicians and patients about disease screening remain problematic.17 Objective disease screening discussions are colored by over 50 years of public health efforts that convey “do not delay” messages for cancer screening.18 Overall, the public has an enthusiasm for health screening. This enthusiasm for cancer screening persists even when they understand the risks of false-positive results-identifying “abnormalities” that have a dubious impact on health but may result in a cascade of costly and often aggressive medical interventions.19 At the same time, physicians often worry about liability issues that might arise from missed diagnosis resulting from a decision not to screen.20,21 Primary care physicians have limited time for complex medical discussions, have limited training in effective SDM techniques6,8,22 and are often not up to date on the latest evidence. Additionally, tension exists between specialists who see patients with advanced disease (and therefore push for aggressive screening) and primary care/population health groups who see the myriad of complications from over-diagnosis.

As such, public and private agencies are seeking methods to help patients make complex medical decisions that go beyond providing written material or engaging in brief discussions. Typically, health messages fail for a variety of reasons: the type of message delivered5,23–26; method of delivery; lack of message reinforcement; lack of access to recommended care; non-acceptance on the part of the individual; and inappropriate education level. Similarly, expert consensus groups have identified strategies (Fig. 1) to effectively empower patients facing value-sensitive decisions—utilizing SDM, tailoring messages to match cultural background, connecting messages to patient values, assessing readiness to change, targeting messaging to individuals or entities that influence decision-making by the patient (e.g., spouse), utilizing direct patient stories and using decision support interventions.23–27 New methods are intended to engage, challenge and motivate patients to make value-concordant health choices, but are not commonly used in clinical practice.10,22,28–32Figure 1.

Two-part model of elements influencing medical decisions around complex medical decisions

Screening for cancer raises complex issues involving risks and benefits to the patient. The ultimate screening decision belongs to the patient informed by best evidence, expert judgment and personal values, and acquisition of clear information is of paramount importance. Information aside, cancer screening discussions are often emotional and influenced by personal, professional and societal factors. This expert panel on communication about prostate cancer screening sought to determine methods to both provide high-quality information and help individuals make value-concordant health choices.

Importantly, our panelists included a variety of stakeholders. Their viewpoints differed, as each group was familiar with a different piece of the prostate cancer screening puzzle. For instance, patient advocates often wanted to protect patients from the harms of testing that were not honestly or openly discussed and from perceived biased viewpoints of specialists. The primary care physicians treated many of the complications of surgery or radiation and did not directly see the benefit of population-level prostate cancer screening. Specialists saw patients who had or were worried about advanced cancer; they strongly believed their procedures saved lives and improved the quality of men’s lives. When our group came to an impasse over a specific perspective, we acknowledged disagreement and moved on to discussion in other areas.

By addressing intervention effectiveness, these recommendations are intended to help providers and others determine the wisdom of particular strategies in pursuit of value-concordant PrCS decision-making. Clearly, potential effectiveness is dependent upon using the right social lever for the right condition—design, engagement strategy and implementation must all be thoroughly considered.23

Multi-faceted interventions utilizing social media, health messages and financial incentives may improve PrCS decision-making. For example, coupling public health announcements on tobacco cessation in California with an increase in cigarette sales tax led to significant decreases in cigarette consumption.36–38 Policies that regulate salt ingestion are predicted to reduce blood pressure, risks of cardiovascular disease and provide substantial savings.39 Similarly, doubling the price of alcohol is projected to reduce alcohol-related and sexually transmitted diseases by 6%.40,41 These social policy changes do not address informed decision-making in clinical care but instead use other societal levers to improve day-to-day decisions leading to the adoption of healthy behaviors. The financial impact of these interventions on the lives of patients was enough to make individual reconsider the value of a cigarette or a drink at the time of purchase. As such, panel participants recommended consideration of new financial/regulatory incentives to improve physician-patient communication around prostate cancer screening to supplement emerging decision-support technology. For instance, financial incentives may encourage patients to discuss cancer screening and preventive behaviors with their physicians-and provide the opportunity for physicians to more thoughtfully engage patients around the risks and benefits of specific interventions.

The panelists strongly encouraged more innovative use of new social and interactive media tools to improve both physician and patient decision-making, rather than simply improving knowledge acquisition.42 Decision support interventions (including for prostate cancer screening) present information in an understandable manner, have been shown to increase knowledge, reduce decisional conflict, clarify values and lead patients to take a more active role in their health care.31,32 Decision support interventions have been shown on meta-analysis to reduce PrCS with PSA.43 However, these patient-focused decision support interventions are infrequently used in clinical practice, often due to lack of awareness of the tools, the additional time taken to utilize the tool or the lack of access to the tool at the point of care.31,32 Well-constructed decision support interventions (icon arrays, stadium diagrams, roulette wheels) address the complexity of medical and numerical information, biases and incorporate patient preferences. Our group emphasized that having a trusted central site (such as within AHRQ, AAMC MedPortal or CDC) with vetted programs would help overcome some of the access issues. System redesign might be necessary to help with decision-aid implementation, with additional time/space allocated to have patients (and physicians) review the decision support interventions. Such aids can provide useful customized output to prepare patients for a discussion with their health care provider.23,44–51

Participants felt that improved physician communication skills should be addressed through educational interventions at three levels-medical school (undergraduate medical education), residency training (graduate medical education) and continuing medical education. Residency programs are increasingly emphasizing patient-oriented outcomes, with attention being paid to enhanced communication skills.52 Evidence suggests that traditional CME does not effectively improve physician practice-based behaviors or decisions,53–55 and CME has tended to ignore assisting clinicians to improve communication skills. Assessment, feedback interventions and recertification examinations offer opportunities to increase clinically meaningful outcomes if they can focus more on clinical behaviors than on factual recall. Panel members also felt that offering providers financial incentives is a tool to facilitate improved decision-making.

Health systems also have an important role to play in improving communications around PrCS, including system and clinic flow changes to systematize screening educational resources, discussions and incentives. Some health care systems have found great success in using reminders to stimulate communication around specific topics (via electronic medical records, emails and social networks). These systems can be expensive, but early reports indicate they seem to reduce overall costs and improve quality (Kaiser Permanente, personal communication).

In summary, effective communication around prostate cancer screening is essential to match available evidence with patient values and desires. This article provides a background for how such communication might be approached from the perspective of providers, patients and the health care system. While all of the suggested interventions require resources to develop and evaluate, the lessons learned now will enhance screening communication in the future.