Listening to Patients: The Question They Answer May Not Be the One We're Asking

Maurie Markman, MD
Published: Sunday, Jul 03, 2016
Maurie Markman, MD

Maurie Markman, MD

The importance of gaining the input of individual patients with cancer into their own medical management cannot be overstated. The patient perspective also is increasingly and appropriately being sought in higher level discussions of the required improvement in study endpoints to define the outcome of a cancer clinical trial as being “meaningful,” or the relative weights to be assigned to various side effects of treatment encountered in specific clinical settings.

To gather information necessary to learn what patients with cancer may feel about a particular topic, researchers develop carefully crafted survey instruments to utilize within specific populations. In well-constructed research projects, great care is taken to be certain the demographics and clinical characteristics of the surveyed group are understood and that an acceptable sample size is available to ensure a statistically valid endpoint.

Further, the survey may be repeated in several settings to be sure of the generalizability of any findings. The researchers will also spend considerable time and effort in ensuring the survey questions are clear and that their word content and structure are understood at the educational level of the included population.

Disconnected From Facts

However, despite all of these efforts, when the data have been collected and the results analyzed, the conclusions that researchers reach may not reflect with complete accuracy what patients are actually saying in their responses to the survey questions.

For example, it has been noted among surveyed patients with very advanced and metastatic cancers that a substantial percentage of individuals respond that the intent of their own treatment is to cure them of their malignancy when the objective facts are that this would be an extremely unlikely outcome.1 This result has been interpreted by some as either a serious misconception by a large number of patients or a failure of oncologists and their teams to provide accurate and honest information regarding prognosis.

Further, the researchers raise the concern that in the absence of an understanding of the legitimate goals of therapy, it may be quite difficult—if not impossible—for these particular individuals to make rational decisions related to therapeutic options in their own management or to appropriately plan for end-of-life care.

Coping Mechanisms

However, it is possible there is another quite different interpretation associated with the responses being provided to the survey regarding the goals of therapy.

In fact, patients may be intellectually fully and acutely aware of the facts of the current limited utility of the antineoplastic therapy available for their cancer. But perhaps, despite this knowledge, they have chosen as a personal coping strategy to focus on “beating the long odds” no matter how bad they may be.

So when asked the question by a researcher, their response may simply reflect this strong coping mechanism, which does not accurately acknowledge their objective understanding. Additionally, they may respond to questions related to their goals in this manner no matter how the question is posed and continued for a period of time in the natural history of their illness that might be considered by an outside observer as being irrational.

This answer is not what they truly understand, but rather how they have elected to emotionally deal with their illness. And, one might appropriately ask whether there is anything inherently wrong with this personal decision if it permits individuals to continue to lead what they consider to be a reasonable life in the face of such devastating circumstances.

Perception Versus Reality

Another example of survey questions where the responses may be saying something quite different from the interpretation reported by the research team is provided by a recent study examining patient perceptions regarding cancer clinical trials.2

Investigators provided patients with a list of statements and inquired whether they were factually correct (as determined by the researchers).

One of the more striking findings in this analysis was that 75.5% of the 1255 respondents agreed with the incorrect statement or were unsure that “most clinical trials involve a placebo (sugar pill)”.

However, perhaps the patients were not actually specifically focusing on the issues of “placebo (sugar pill)” in their response, but rather were addressing a far wider issue, and that is the fundamental ethical foundation of a substantial portion of cancer research in this country. Is it possible patients were signaling a lack of trust about the issue of randomization itself, whether to a “placebo,” “no-treatment” or “worthless and toxic antineoplastic drug” control arm?


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