From the Journals

Many misunderstand purpose of tumor profiling research



Although most cancer patients and parents of cancer patients understand that genomic tumor profiling research aims to improve care for future patients, many also believe that the process will benefit present treatment, according to a recent survey conducted at four academic treatment centers.

Misunderstandings were most common among less-educated individuals and those with little genetic knowledge, reported lead author Jonathan M. Marron, MD, MPH, of the Dana-Farber Cancer Institute in Boston and his colleagues.

Previous surveys have shown that “up to 60% of research participants demonstrate evidence of therapeutic misconception,” the investigators wrote in JCO Precision Oncology, referring to “the belief that the primary purpose of research is therapeutic in nature rather than acquisition of generalizable knowledge.”

“Although advances in targeted therapeutics generate great excitement, they may also blur the line between research and clinical care,” the investigators wrote. As such therapeutics become more common, so may misconceptions.

To evaluate current views of genomic tumor profiling research, the investigators surveyed 45 cancer patients and parents of cancer patients at four academic treatment centers. All patients were aged 30 years or younger at enrollment and undergoing tumor profiling; parents were asked to respond if patients were younger than 18 years.

The survey was divided into two sections: basic understanding and comprehensive understanding. To achieve basic understanding, a respondent needed to recognize that “the primary purpose was not to improve the patient’s treatment.” To achieve comprehensive understanding, the respondent needed to recognize four facts: “primary purpose was not to improve patient’s treatment,” “primary purpose was to improve treatment of future patients,” “there may not be direct medical benefit,” and “most likely result of participation was not increased likelihood of cure.”

Forty-four out of 45 survey participants responded. Of these, 30 (68%) demonstrated basic understanding, and 24 (55%) had comprehensive understanding. Respondents with higher education were more likely to answer correctly, with 81% showing basic understanding and 73% showing comprehensive understanding; among less-educated respondents, only half (50%) had basic understanding, and about 1 out of 4 (28%) had comprehensive understanding. Similar disparities were observed among respondents with more versus less genetic knowledge. Almost all respondents (93%) who thought that profiling would help present treatment also believed it would benefit future patients.

Taken as a whole, these findings suggest that therapeutic misconception in genomic tumor profiling research is relatively common, which echoes previous findings. The investigators recommended that clinicians anticipate these knowledge gaps and aim to overcome them.

“Interventional work to improve participant understanding of these complexities and nuances is necessary as sequencing moves from the laboratory to the clinic,” the investigators concluded. “Such work can guide pediatric oncologists in how to manage expectations and best counsel patients and families about the meaning and significance of clinical profiling results.”

The study was funded by Hyundai Hope on Wheels, the Friends for Life Foundation, the Gillmore Fund, National Institutes of Health, and others. The investigators reported financial affiliations with Merck, Millennium, Novartis, Roche, Amgen, and others.

SOURCE: Marron et al. JCO Precis Oncol. 2019 Jan 22. doi: 10.1200/PO.18.00176.

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