A proposal to rename small low-risk papillary thyroid cancers (sPTCs) to discourage overtreatment has met with a mixed reception from the public.
Experts have suggested changing terminology to better communicate the indolent nature of sPTCs and improve uptake of active surveillance rather the current preferred pathway of surgery.
In a recent BMJ paper they said sPTCs have low risk of metastasis yet are increasingly detected, with most patients treated surgically with thyroidectomy or lobectomy, potentially requiring long-term hormone treatments with quality of life impacting side-effects.
They said patient and clinician preference for surgery may be driven by the use of anxiety-inducing cancer terminology, but this may be avoided by renaming and reclassifying sPTCs with a non-cancer label.
However when Australian researchers put this proposal to a “community jury”, of randomly selected citizens, terminology change was rejected in the first instance by a vote of 11-2.
In a paper in the journal Thyroid, researchers from the University of Wollongong said the ‘citizens jury’ were educated about thyroid cancer, overdiagnosis and overtreatment, and heard arguments for and against terminology change before deliberation.
While there was agreement about the psychological distress, stigma and overtreatment associated with a cancer diagnosis, the jury expressed “a strong desire to retain terminology that aligns with the pathological definition of cancer, and to avoid even a minimal risk of harm that could arise if patients became complacent in follow-up,” they noted.
A refined proposal resulted in a ‘hung verdict’ by two subsequent juries, with the recurrent theme expressed that “cancer is cancer” and should not be concealed
“Jurors who took this position … reasoned it would be irresponsible to ignore even the lowest risk of harm by changing terminology because it could mislead patients to the extent that they expect no chance of disease progression, and/or result in complacency towards active surveillance,” the study authors said.
Jury members also argued that current evidence was insufficient to support the proposed reforms, and wanted more reassurance that any unintended consequences of reclassification can be mitigated.
The juries unanimously recommended community education and health system reforms to reduce harms of overtreatment of low-risk sPTCs. They also expressed an expectation that clinicians and researchers reach agreement on clinical guidelines to promote better uptake of active surveillance.
The study authors concluded that terminology change for low risk thyroid cancers to avoid overtreatment was a complex issue that elicited divided and often changing responses from the public.
“This highlights an ongoing challenge for those advocating changing disease terminology,” they concluded.