Removal of ‘cancer’ label could reduce overdiagnosis, overtreatment of low-risk disease
Use of the term “cancer” at diagnosis may prompt individuals with low-risk lesions to choose aggressive treatment that could do more harm than good, according to an analysis published in British Medical Journal.
“Removing the word ‘cancer’ for low-risk conditions that are unlikely to cause harm if left untreated may help reduce overdiagnosis and overtreatment,” Brooke Nickel, PhD candidate at University of Sydney School of Public Health in Australia, and colleagues wrote.
Mounting data suggest disease labels affect psychological responses and treatment decisions.
Nickel and colleagues examined how changes in terminology affected treatment preferences and anxiety levels for patients with small papillary thyroid cancers, a slow-growing malignancy associated with cure rates higher than 90%.
HemOnc Today spoke with Nickel about the results and their implications.
Question: What prompted the analysis?
Answer: There have been high-level calls in recent years from international cancer experts, including an NIH panel and NCI working group, to change the terminology of low-risk cancers unlikely to cause harm if left undetected and untreated. These calls were made to help reduce the growing concern of overdiagnosis and potentially help alleviate associated patient anxiety, therefore allowing patients to consider less aggressive treatments. Our analysis also was inspired by evidence that suggests the indolent nature of some low-risk cancers, and the appropriateness of following an active surveillance management plan instead of proceeding to immediate surgery for these specific tumor types.
Q: How did you conduct the analysis?
A: The aim of our analysis article was to summarize the evidence on the impact of the cancer label and consider the potential implications of redefining very low-risk cancers, including intrathyroidal papillary thyroid cancer, low-and intermediate-grade ductal carcinoma in situ and localized prostate cancer. We called for a roundtable of international cancer experts, patients and citizens to consider whether removing the cancer label might be an option for some of these low-risk conditions.
Q: What do you and colleagues now recommend ?
A: We know from studies across various condition contexts that the use of more medicalized labels, including cancer, leads to higher preferences for more aggressive treatments and higher rates of anxiety and/or perceived severity of the condition. Alongside this, we now know that some cancers are nongrowing or so slow growing that they will never cause harm. Therefore, we believe now may be time to remove the cancer label for these very low-risk conditions.
Q: What are the clinical implications?
A: Any re-labeling process needs to consider the effect not only on new patients but also on those already diagnosed. Removing cancer and redefining certain low-risk conditions may lead patients to reconsider the nature and extent of follow-up and question the need for additional treatments, potentially reducing overtreatment and any associated harmful psychological effects. On the other hand, patients may perceive the new label as undermining their current care. They may perceive they have been falsely classified, are no longer cancer survivors, and may have received unnecessary treatments. This may cause psychological distress and confusion. Any change would need to be done through a multistakeholder process, as the one we suggest in the article, to help ensure appropriate evidence-based care and support for both future and current patients.
Q: Do you have plans for subsequent research?
A: We published a study in JAMA Otolaryngology-Head Neck Surgery that adds to the body of evidence to support potentially removing the cancer label. In this study, we found that participants had a higher preference for surgery — compared with active surveillance — and had significantly higher levels of anxiety when ‘cancer’ was used to describe a hypothetical diagnosis of papillary thyroid cancer compared with when a noncancer label was used. We do not have any plans for additional research, as we know from this and other hypothetical studies that the use of ‘cancer’ can increase both concern about illness and the desire for more aggressive treatments. However, future research in this area is still needed in a clinical context. In practice, the use of different terms may induce different responses from patients than those identified in our study. – by Jennifer Southall
Nickel B, et al. BMJ. 2018;doi:10.1136/bmj.k3322.
Nickel B, et al. JAMA Otolaryngol Head Neck Surg. 2018.doi:10.1001/jamaoto.2018.1694.
For more information:
Brooke Nickel can be reached at University of Sydney, NSW 2006, Australia; email: firstname.lastname@example.org.
Disclosure: Nickel reports no relevant financial disclosures.