About half of cancer patients did not know their disease stage, and nearly one third were “unsure” of their cancer status, including some who had no evidence of disease, according to a survey at a Pennsylvania center.
In summary, more than a quarter of the surveyed patients had a “poor understanding of their illness,” concluded the survey authors, led by Shanthi Sivendran, MD, a hematologist-oncologist at the Ann Barshinger Cancer Institute, Penn Medicine at Lancaster General Health.
In the study, “understanding cancer” was defined as accurately knowing disease stage and status (free of disease/in remission vs active disease). The study was published online July 5 in the Journal of Oncology Practice.
The investigators mailed the survey to 208 patients who had been treated at the center within the past 2 years. They compared self-reported responses to medical records.
On an upbeat note, the majority of the patients (86.5%) knew their cancer type.
However, with regard to knowing stage, the concordance between self-reporting and the medical records was much lower. Only 51% of the whole group accurately knew their stage. Notably, the agreement was lower among patients with stage I-III disease (36% to 61.5%) compared to patients with advanced disease (72%).
Overall, 64.4% of the surveyed group accurately knew their cancer status. However, 30% were unsure of their status.
“Patients may have a hard time synthesizing all the information we give them,” Dr Sivendran told Medscape Medical News.
Whether or not this lack of understanding has clinical ramifications is uncertain, say the authors.
“Our study does not indicate whether patients’ treatments choices or goals of care were affected by their awareness, but it does suggest limitations in the informed consent process,” they write.
Toby Campbell, MD, a medical oncologist at the Carbone Cancer Center, the University of Wisconsin, in Madison, was “not surprised by the findings.”
“Patients struggle both with interpretation of jargon (eg, what does stage IIb mean) as well as contextualization (eg, what does “the cancer is in the liver” mean),” he told Medscape Medical News in an email.
Dr Campbell, who was not involved with the study, cited previous research that “has taught us that there is cognitive (and probably emotional) resistance to the information and the prognostic implications.” The end result is that “the information has a more difficult time being incorporated” by patients.
Dr Campbell has a simple way to work around resistance. He asks patients, “Do you want to talk about what this means?”
Do you want to talk about what this means?
That is “a prompt which creates space to discuss prognostic information if the patient/family invite it,” he said.
The technique has a couple of benefits. It yields “control back to patients,” which facilitates acceptance, and “also liberates the oncologist to talk in lay terms,” Dr Campbell said.
Dr Sivendran emphasized that conversations about disease status and prognosis must occur “throughout the course of illness.”
Checking and rechecking a patient’s “wishes and expectations” helps ensure “that any treatment is concordant with what the patient wants,” she said.
Importantly, since the survey was undertaken, the Barshinger Cancer Institute has revised its practices and now provides each patient with a treatment care plan, as recommended by the Institute of Medicine.
The plan “clearly outlines in writing the cancer, stage, prognosis, intent of treatment, treatment course, and additional services we recommend,” said Dr Sivendran. The plan is verbally reviewed with the patient, who receives a printed copy and has access to an electronic version as well.
“This information is available to a patient’s primary care physician and any consulting physicians, so that the entire medical team is on the same page about the goals and expectations of treatment,” she added.
Who’s More Likely to Be in the Know
The study patients reflected their locale; they were mostly white (95%), spoke English (94%), and had annual household incomes of less than $60,000 (64%). The study results may not be generalizable because of the homogeneity of the population, the authors state.
The team reports that patients who were concordant for cancer stage at diagnosis were significantly more likely to be female (P = .001), younger than age 65 years (P = .01), have an income >$60,000 (P = .03), and have more education (P = .02).
The authors observe that the study findings are partly consistent with a larger study on this subject from Korea, which reported 57% concordance with stage reporting (PLoS One. 2014;9:e90483). However, the Korean study found that concordance decreased among patients with advanced disease, which was the opposite of the findings in the current study. Dr Sivendran and colleagues acknowledged that their findings about patients with stage IV disease are not strong because of the relatively small number of the patients in that subgroup (n = 28).
The authors and Dr Campbell have disclosed no relevant financial relationships.
J Oncol Pract. Published online July 5, 2017. Abstract
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