AIBD 2010: How Do You Explain Risk and Probability to IBD Patients?


Issues of health literacy and numeracy come into play when identifying the best strategies for explaining the risk associated with treatments for IBD.

Effectively conveying the risk associated with inflammatory bowel disease (IBD) treatments to patients leads to deeper physician-patient relationships and prepares patients to weigh the benefits and risks of treatment, according to research presented at the 2010 Advances in Inflammatory Bowel Diseases, the Crohn's & Colitis Foundation's Clinical & Research Conference, being held December 9-12 in Hollywood, FL.

Bruce Sands, MD, MS, Chief of the Henry D. Janowitz Division of Gastroenterology at Mount Sinai School of Medicine, discussed best practices for conveying the risks of therapy, procedures, and surgery to IBD patients. He said, “By definition, risk is a combination of probability and consequence. However, the way patients perceive risk may vary, and conveying risk in an effective way is most important so patients have a strong understanding of the risks and benefits of treatment and can make informed decisions.”

Clinicians need to be able to take information that may appear to be catastrophic, uncontrollable, dreadful, or involuntary to a patient, and explain it so that patients can relate to as not being as scary, dreadful, and controllable, reducing the fear associated with risk. It is important for clinicians to clearly convey the amount of benefit patients should expect from treatment and the amount of risk they would be taking.

In a Web-based surgery of 580 patients with Crohn’s disease (CD), investigators used conjoint/trade-off analysis to evaluate patients’ willingness to accept the risk of treatment-related side effects associated with infliximab in exchange for improvement in daily symptoms. The investigators found that many patients who had actually been taking infliximab would not have taken the drug if they had clearly understood the risks involved with treatment. In this study, patients were most concerned with symptom severity, followed by progressive multifocal leukoencephalopathy (PML), lymphoma risk, and serious infection risk. However, the more benefit patients perceived they would receive from treatment, the more risk patients were willing to take.

According to Sands, the factors that influence responses to information on risk, include:

  • Extent to which source of information is trusted
  • Relevance of information for everyday life and decision making
  • Relation to other perceived risks
  • Relation to previous knowledge and experience
  • Difficulty and important of choices and decisions

A model for therapeutic communication that involves shared decision-making between patients and clinicians is essential for understanding the benefit and risk of treatment. To improve communication, Sands said that physicians need to “build relationships of trust, be aware of multiple and conflicting sources of risk information that patients access, and be sensitive to psychological and social factors that influence ways in which patients respond to risk information.”

In conveying risk, hard numbers are difficult for patients to digest and fully understand. In addition, conditional probabilities are especially difficult for physicians to communicate and should be replaced or used in combination with “natural frequencies,” which “put things in a better perspective than conditional probabilities for patients and even for physicians as well,” Sands said. Also, physicians should discuss probability in terms of absolute risk instead of relative risk. For example, physicians should not use constructs such as “Mammography reduces breast cancer mortality by 25%.” A preferable (and more understandable for patients) way to explain this would be to say, “In every 1,000 women who undergo screening, one will be saved from dying of breast cancer.”

“Framing” is another concern when conveying risk, as it can actually mislead patients. Graphically or pictorially using Paling diagrams may clearly convey the risk of adverse events associated with treatment more effectively to patients. In addition, putting risk in perspective to other more common occurrences, such as the lifetime risk of dying from a lighting strike, bicycling accident, car accident, cancer, or heart disease may outline the risk associated with IBD treatment more effectively.

Although there may be disagreement over the best ways to communicate risk, the fact is that patients want to be involved in treatment decisions and they want to be informed regarding the risks and benefits of treatment. The question remains: Do patients need to know the exact risk or just the gist? According to Sands, “Effective risk communication all comes back to the doctor-patient relationship,” and what patients will really remember about the conversation with their physician regarding risk will be the gist of the information, not the exact facts and figures. Therefore, practicing clinicians should:

  • Provide absolute risks rather than relative risk
  • Avoid decimals
  • Keep common denominators
  • Use visual aids to help explain benefit versus risk
  • Give perspective to other disease and lifetime risks
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