Renaming low risk conditions labelled as cancer

Nickel, Brooke; Moynihan, Ray; Barratt, Alexandra; Brito, Juan P.; McCaffery, Kirsten

doi:10.1136/bmj.k3322

Cited by 36 publications

(34 citation statements)

References 55 publications

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“…A key next step recommended by panelists was a separate consensus process to establish language that clinicians should use when describing DCIS, although consensus was not achieved on whether to refer to DCIS as something other than cancer. Research has found that significantly more women chose surgery when DCIS was referred to as non-invasive cancer compared with breast lesion or abnormal cells, women are increasingly choosing mastectomy and bilateral mastectomy rather than lumpectomy even though these treatments do not improve breast cancer-specific survival, and clinicians may be driven to over-diagnose and over-treat DCIS due to fear of litigation or missing disease, and feeling compelled to do something rather than nothing [ 45 , 46 ]. Hence, changing the label for DCIS may be a strategy that avoids over-treatment or, until ongoing trials demonstrate the clinical effectiveness of active surveillance for DCIS [ 4 – 6 ], at the very least reduces confusion and anxiety among women diagnosed with DCIS, and concern about explaining DCIS among clinicians.…”

Section: Discussionmentioning

confidence: 99%

National consensus recommendations on patient-centered care for ductal carcinoma in situ

Gagliardi

Wright

Hong

et al. 2019

Breast Cancer Res Treat

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Purpose The purpose of this research was to generate recommendations on strategies to achieve patient-centered care (PCC) for ductal carcinoma in situ (DCIS). Methods Thirty clinicians (surgeons, medical/radiation oncologists, radiologists, nurses, navigators) who manage DCIS and 32 DCIS survivors aged 18 or older were nominated. Forty-six recommendations to support PCC for DCIS were derived from primary research, and rated in a two-round Delphi process from March to June 2018. Results A total of 29 clinicians and 27 women completed Round One, and 28 clinicians and 22 women completed Round Two. The 29 recommendations retained by both women and clinicians reflected the PCC domains of fostering patient–physician relationship (5), exchanging information (5), responding to emotions (1), managing uncertainty (4), making decisions (9), and enabling patient self-management (5). An additional 13 recommendations were retained by women only: fostering patient–physician relationship (1), exchanging information (3), responding to emotions (2), making decisions (3), and enabling patient self-management (4). Some recommendations refer to processes (i.e., ask questions about lifestyle or views about risks/outcomes to understand patient preferences); others to tools (i.e., communication aid). Panelists recommended a separate consensus process to refine the language that clinicians use when describing DCIS. Conclusions This is the first study to generate guidance on how to achieve PCC for DCIS. Organizations that deliver or oversee health care can use these recommendations on PCC for DCIS to plan, evaluate, or improve services. Ongoing research is needed to develop communication tools, and establish labels and language for DCIS that optimize communication. Electronic supplementary material The online version of this article (10.1007/s10549-019-05132-z) contains supplementary material, which is available to authorized users.

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Section: Discussionmentioning

confidence: 99%

National consensus recommendations on patient-centered care for ductal carcinoma in situ

Gagliardi

Wright

Hong

et al. 2019

Breast Cancer Res Treat

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“…The counter to this is that a diagnosed cancer (that may otherwise have not caused problems) may lead to unnecessary treatment, further testing, and the psychological consequences of being given a disease label. 17 We don't fully understand how these trade-offs play out in populations of symptomatic patients.…”

Section: Reassuringly Normal?mentioning

confidence: 99%

The elusive diagnosis of cancer: testing times

2018

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“…For example it has been suggested to rename DCIS indolent lesions of epithelial origin (IDLE) (19). Other conceptual changes can be found with papilloma and grade 1 carcinoma of the bladder, cervical intraepithelial neoplasia, and non-invasive encapsulated follicular variant of papillary thyroid carcinoma (20). How we define (and how we name) conditions also expands disease.…”

Section: Expanding Definitions (Conceptual)mentioning

confidence: 99%

Expanding disease and undermining the ethos of medicine

Hofmann

2019

Eur J Epidemiol

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The expansion of the concept of disease poses problems for epidemiology. Certainly, new diseases are discovered and more people are treated earlier and better. However, the historically unprecedented expansion is criticised for going too far. Overdiagnosis, overtreatment, and medicalization are some of the challenges heatedly debated in medicine, media, and in health policy making. How are we to analyse and handle the vast expansion of disease? Where can we draw the line between warranted and unwarranted expansion? To address this issue, which has wide implications for epidemiology, we need to understand how disease is expanded. This article identifies six ways that our conception of disease is expanded: by increased knowledge (epistemic), making more phenomena count as disease (ontological), doing more (pragmatic), defining more (conceptual), and by encompassing the bad (ethic) and the ugly (aesthetic). Expanding the subject matter of medicine extends its realm and power, but also its responsibility. It makes medicine accountable for ever more of human potential dis-eases. At the same time it blurs the borders and undermines the demarcation of medicine. Six specific advices can guide our action clarifying the subject matter of medicine in general and epidemiology in particular. To avoid unlimited responsibility and to keep medicine on par with its end, we need to direct the expansion of disease to what effectively identifies or reduces human suffering. Otherwise we will deplete medicine and undermine the greatest asset in health care: trust.

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Renaming low risk conditions labelled as cancer

Abstract: Removing the cancer label in low risk conditions that are unlikely to cause harm if left untreated may help reduce overdiagnosis and overtreatment, argue Brooke Nickel and colleagues

Cited by 36 publications

References 55 publications

National consensus recommendations on patient-centered care for ductal carcinoma in situ

National consensus recommendations on patient-centered care for ductal carcinoma in situ

The elusive diagnosis of cancer: testing times

Expanding disease and undermining the ethos of medicine

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