Progress in Cancer Care: The Hope, the Hype, and the Gap Between Reality and Perception

Abstract

Many of the recent advances that have been made in cancer care have been, although arguably important, relatively modest. Sometimes, however, these modest, incremental advances have been presented, discussed, or at least perceived by medical and lay audiences alike, as major advances or so-called breakthroughs. Discussions of the actual data and frank delineation of the limits of the true contribution of a new agent are often met with responses such as “Is that all it does?” or “Why did I think it did so much more?” Why are perceptions and reality so frequently disparate? One important, and correctable, reason is a widely accepted use of terminology that inadvertently facilitates, and at times even encourages, an overly optimistic interpretation of stated results. Although adopted with the best of intentions to instill optimism into a difficult situation, to provide for gentle and compassionate communication of devastating news, or to provide statistical and technical accuracy, still the effect in too many cases has been, in the long run, exactly the opposite of what was originally intended. Under the guise of scientific or statistical rigor, the use of certain terms in fact serves to regularly permit us to hear, whether said or not, an overstatement of accomplishments. The terms are technically correct, and an expert in the field will have no problem accurately understanding what is being stated. However, when these terms are used to communicate the same information to a less specialized medical audience, or, even more so, to the public, misunderstandings frequently occur. We are not discussing here the objective results of the trials, nor the relative merits of various metrics used to report those trials but, rather, the subjective interpretations and common misinterpretations of those data, based not on what the numbers said, but on what was said about the numbers. This article does not represent a systematic review of publications to address the frequency of specific concerns, but rather offers some general qualitative observations for consideration. Outlined herein are several examples of such terminologies with potential for ambiguity and recommendations for modifications of these terms that would diminish these opportunities for misunderstanding. Such changes would encourage a more direct accounting of our successes and failures and would facilitate more rational expectations on the part of patients, more accurate understanding on the part of clinicians, and more accurate representation of the relative benefits of a therapy versus its costs and its risks. SUBSTANTIAL SIGNIFICANCE OF THE DIFFERENCE BETWEEN SUBSTANTIAL AND SIGNIFICANT