publication date: Mar. 16, 2018

Do patients know best? Industry, NCI committing dollars to studying patient-reported outcomes

By Matthew Bin Han Ong

Researchers are coming to the conclusion that cancer patients are the best authority on how therapies affect them.

Over the past few years, about 20 NCI trials and over 125 industry studies have incorporated direct reports of symptomatic adverse events by cancer patients through an NCI program.

Last year, building on Vice President Joe Biden’s 2016 Cancer Moonshot, NCI issued a Request for Applications to study application of patient-reported outcomes. The institute said it intends to commit $3.25 million in FY2018 to fund three to five awards.

Here is how such data can be used: (1) investigators predict a therapy’s side effects, (2) they list these side effects in an electronic questionnaire, (3) patients report on their experience, and (4) investigators refine their understanding of the way the drug is tolerated and, possibly, adjust the regimen.

Some studies have shown that reporting of symptomatic adverse events by patients is more reliable than such assessments by physicians. Two oncologists seeing the same patient minutes apart from each other tend to disagree quite frequently about the level and severity of symptoms.

Through patient-reported outcomes, clinicians would be able to improve the measurements of risk and benefits, said Ethan Basch, director of the Cancer Outcomes Research Program and professor of medicine and public health at the UNC Lineberger Comprehensive Cancer Center.

“There was previously a bias among some investigators that ‘I know better than my patients,’ or that we can’t really trust patients to be reliable, or that patients will be too ill to report their own toxicties, but empiric data show that … Continue reading Do patients know best? Industry, NCI committing dollars to studying patient-reported outcomes

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