Choice of terms used to describe cancer may affect patient decisions
Nomenclature for low-grade prostate cancer affected initial perception of the disease among online survey participants presented with a hypothetical clinical scenario, according to research published in Cancer.
The results indicated terms used to describe prostate cancer could impact a man’s subsequent decision-making, including preference for active surveillance, researchers wrote.
“The disease label a physician chooses to use will contribute to the early impressions a patient forms about their condition and may affect how they choose to manage their disease,” Matthew T. Hudnall, MD, MPH, resident in the department of urology at Northwestern University Feinberg School of Medicine, told Healio.
“As nomenclature for prostate cancer has already been revised to a more intuitive 1-to-5 grading scale, it is the responsibility of the physician to introduce the disease in terms a patient can more easily comprehend as part of the shared decision-making process,” he added. “‘Grade group 1 out of 5 prostate cancer’ better reflects the low-risk nature of the disease than the historical Gleason 6 disease, and may increase preference for active surveillance on first impression.”
Questions regarding the disease label or nomenclature for low-grade prostate cancer have been asked for years. In a 2012 article published in Journal of Clinical Oncology, Carter and colleagues asked whether Gleason score 6 adenocarcinoma should be labeled cancer because of an ongoing problem of overtreatment.
In prostate cancer and other malignancies, the language used to describe a disease upon diagnosis can carry enormous meaning for patients and evoke emotional and psychosocial responses, Michael S. Leapman, MD, assistant professor of urology and clinical program leader of the prostate and urologic cancers program at Yale Cancer Center, and Gregory C. McMahon, DO, urologist and instructor at Yale School of Medicine, wrote in an editorial that accompanied the study by Hudnall and colleagues.
“These experiences extend to patients who are diagnosed with ‘low-risk’ prostate cancer —those who have low disease stage, prostate-specific antigen levels and histologic grade — for whom the absolute risks of disease progression or mortality are very low, even in the absence of treatment,” Leapman and McMahon wrote. “Yet, for patients with ostensibly indolent cancers, past personal experiences with the disease and the quality of clinical information received about the diagnosis can obscure their perception of risk. Beyond an emotional burden, inflated assessments of risk can also lead to harms, such as receiving unnecessarily invasive treatments and their associated effects on health-related quality of life.”
Effects on management, anxiety
Hudnall and colleagues conducted their online survey among men with no history of prostate cancer to determine how three terms for the same disease affected management decision-making: Gleason 6 out of 10 prostate cancer (the historical term for low-grade tumors); grade group 1 out of 5 prostate cancer (the revised International Society of Urologic Pathologists label for lowest-grade tumors); and indolent lesion of epithelial origin, or IDLE (a suggested term that eliminates the “cancer” label).
The 718 survey participants (mean age, 61 ± 11 years; 90% white) were presented with a hypothetical clinical scenario in which they received a new diagnosis of low-grade prostate cancer. The researchers then determined whether diagnosis nomenclature correlated with management preference and diagnosis-related anxiety, using multivariable linear regression to adjust for participant characteristics.
Results showed an association of the term “grade group 1 out of 5 prostate cancer,” compared with “Gleason 6 out of 10 prostate cancer” at the time of initial diagnosis, with a lower preference for immediate treatment vs. active surveillance (B = 9.3; 95% CI, 14.4 to 4.2). In addition, “grade group 1 out of 5” appeared associated with lower diagnosis-related anxiety (B = 8.3; 95% CI, 12.8 to 3.8) and lower perceived disease severity (B = 12.3; 95% CI, 16.5 to 8.1) than the “Gleason 6 out of 10” label at time of diagnosis.
Researchers reported decreased differences as participants received more disease-specific education. They found no association between the third label, IDLE, and differences in anxiety or preference for active surveillance.
“The preference for the term ‘grade group 1 out of 5 prostate cancer’ over ‘Gleason 6 out of 10 prostate cancer’ is something that we expected,” Hudnall said. “Intuitively, something that is a 1 on a 1-to-5 scale sounds like it will be low risk, whereas something that is a 6 may cause confusion for patients.
“We thought IDLE would be perceived more favorably, like the grade group 1 term, since it does not contain the word cancer, but we didn’t see that in our results,” he added. “The term may just be too complex to simply convey to patients the low-risk nature of their disease.”
Two years ago, researchers in Canada explored the subject of cancer nomenclature using an online survey that presented participants with hypothetical “vignettes.”
The study by Dixon and colleagues, published in JAMA Oncology, sought to answer the question: “What role does disease label play in patients’ treatment decision-making in the setting of low-risk epithelial malignant neoplasms such as papillary thyroid cancer?”
Researchers evaluated responses of 1,068 predominantly healthy individuals (median age, 35 years; range, 18-78; 56.6% women) who indicated their preferences between vignettes that depicted incidental discovery of a small thyroid lesion. The vignettes differed on three attributes: disease label (cancer, tumor or nodule); treatment (active surveillance or hemithyroidectomy); and risk for progression or recurrence (0%, 1%, 2% or 5%).
Dixon and colleagues determined disease label “played a considerable role” in the decision-making of respondents, independent of treatment offered and risk for progression or recurrence. Results showed that, to avoid labeling their disease as cancer in favor of nodule, participants accepted a 4 percentage-point increase — from 1% to 5% — in risk for progression or recurrence (marginal rate of substitution [MRS] = 1; 95% credible interval [Crl], 0.9-1.1). In addition, participants’ preference for nodule vs. cancer was similar in magnitude to the preference for active surveillance vs. surgery (MRS = 1; 95% CI, 0.9-1.1).
Two physicians addressed the nomenclature issue in an article published in 2019 in The BMJ titled, “Should we rename low-risk cancers?”
Laura J. Esserman, MD, MBA, surgeon, breast cancer oncology specialist and director of the UCSF Breast Cancer Center at UCSF Helen Diller Family Comprehensive Cancer Center, argued that modern screening programs detect more low-risk cancers and for some of those — including thyroid, prostate and breast cancers — active surveillance may be optimal over invasive surgery. But, it becomes “difficult to encourage patients to wait and watch once they have been told they have cancer,” she wrote.
Esserman told Healio that the cancer care community needs “to do a better job of defining what is cancer.”
“There are molecular tools in development and on the market that can do a better job of stratifying risk,” she said. “These are good enough for prime time. There are tumors with pretty low risk that should have a less scary name.”
On the other side of the debate, Murali Varma, MD, consultant histopathologist in the department of cellular pathology at University Hospital of Wales, asserted new labels could create more confusion.
“Removing the cancer label would not prevent serious psychosocial and financial consequences if accompanied by a recommendation for protracted follow-up, as is the case for active surveillance for prostate cancer," Varma wrote.
Additionally, he argued it is impossible to determine the “natural course” of the tumor if left untreated. He emphasized the need to educate providers and patients so they understand the totality of the diagnosis.
“If the public were educated that benign signifies very low risk rather than no risk at all, then anxiety-inducing labels could be avoided,” Varma wrote.
In the name of clarity
Thorough communication at diagnosis and consistent dialogue throughout a patient with cancer’s journey are vital to ensure understanding of the disease, according to Hudnall.
“Cancer care team members should be consistently using terms comprehensible to patients to describe their disease whenever possible,” he told Healio. “At the same time, thorough counseling of patients and assessment of what they understand about their diagnosis will continue to be most important in determining the course of action a patient chooses to pursue.”
McMahon and Leapman concurred.
“Delivering clinical information that is both scientifically accurate and appropriately framed to convey its intended meaning is a foundation for engaging in high-quality decision-making,” they wrote in their editorial.
Ever-changing technologies could add a new wrinkle to the debate over cancer nomenclatures. In a digital world, patients could find out their diagnoses on their smartphones, before having a thorough conversation with their oncologists.
“With recent changes to patients’ ability to access the information in their medical records, it is conceivable that a patient may see their pathology report before their urologist has had the opportunity to explain the results in context,” Hudnall said. “The language and terms used in pathology reports may generate first impressions for how a patient views their disease.”
Carter HB, et al. J Clin Oncol. 2012:doi:10.1200/JCO.2012.44.0586.
Dixon PR, et al. JAMA Oncol. 2019;doi:10.1001/jamaoncol.2019.0054.
Esserman LJ and Varma M. BMJ. 2019;doi:10.1136/bmj.k4699.
Hudnall MT, et al. Cancer. 2021;doi:10.1002/cncr.33621.
McMahon GC and Leapman MS. Cancer. 2021;doi:10.1002/cncr.33619.
For more information:
Laura J. Esserman, MD, MBA, can be reached at UCSF Breast Care Center, 1825 4th St., Box 1710, PCMB 3rd Floor, San Francisco, CA 94158; email: email@example.com.
Matthew T. Hudnall, MD, MPH, can be reached at Department of Urology, Feinberg School of Medicine, Northwestern University, 676 N St. Clair St., Arkes 23-010, Chicago, IL 60611; email: firstname.lastname@example.org.