Brooke Nickel

Too much medicine in older people? Deprescribing through shared decision making

Jansen and colleagues explore the role of shared decision making in tackling inappropriate polypharmacy in older adults

How different terminology for ductal carcinoma in situ impacts women's concern and treatment preferences: a randomised comparison within a national community survey

Objective There have been calls to remove ‘carcinoma’ from terminology for in situ cancers such as ductal carcinoma in situ (DCIS), to reduce overdiagnosis and overtreatment. We investigated the effect of describing DCIS as ‘abnormal cells’ versus ‘pre-invasive breast cancer cells’ on womens concern and treatment preferences. Setting and participants Community sample of Australian women (n=269) who spoke English as their main language at home. Design Randomised comparison within a community survey. Women considered a hypothetical scenario involving a diagnosis of DCIS described as either ‘abnormal cells’ (arm A) or ‘pre-invasive breast cancer cells’ (arm B). Within each arm, the initial description was followed by the alternative term and outcomes reassessed. Results Women in both arms indicated high concern, but still indicated strong initial preferences for watchful waiting (64%). There were no differences in initial concern or preferences by trial arm. However, more women in arm A (‘abnormal cells’ first term) indicated they would feel more concerned if given the alternative term (‘pre-invasive breast cancer cells’) compared to women in arm B who received the terms in the opposite order (67% arm A vs 52% arm B would feel more concerned, p=0.001). More women in arm A also changed their preference towards treatment when the terminology was switched from ‘abnormal cells’ to ‘pre-invasive breast cancer cells’ compared to arm B. In arm A, 18% of women changed their preference to treatment while only 6% changed to watchful waiting (p=0.008). In contrast, there were no significant changes in treatment preference in arm B when the terminology was switched (9% vs 8% changed their stated preference). Conclusions In a hypothetical scenario, interest in watchful waiting for DCIS was high, and changing terminology impacted womens concern and treatment preferences. Removal of the cancer term from DCIS may assist in efforts towards reducing overtreatment.

What do you think overdiagnosis means? A qualitative analysis of responses from a national community survey of Australians

Objective Overdiagnosis occurs when someone is diagnosed with a disease that will not harm them. Against a backdrop of growing evidence and concern about the risk of overdiagnosis associated with certain screening activities, and recognition of the need to better inform the public about it, we aimed to ask what the Australian community understood overdiagnosis to mean. Design, setting and participants Content analysis of verbatim responses from a randomly sampled community telephone survey of 500 Australian adults, between January and February 2014. Data were analysed independently by two researchers. Main outcome measures Analysis of themes arising from community responses to open-ended questions about the meaning of overdiagnosis. Results The sample was broadly representative of the Australian population. Forty per cent of respondents thought overdiagnosis meant exaggerating a condition that was there, diagnosing something that was not there or too much diagnosis. Twenty-four per cent described overdiagnosis as overprescribing, overtesting or overtreatment. Only 3% considered overdiagnosis meant doctors gained financially. No respondents mentioned screening in conjunction with overdiagnosis, and over 10% of participants were unable to give an answer. Conclusions Around half the community surveyed had an approximate understanding of overdiagnosis, although no one identified it as a screening risk and a quarter equated it with overuse. Strategies to inform people about the risk of overdiagnosis associated with screening and diagnostic tests, in clinical and public health settings, could build on a nascent understanding of the nature of the problem.

Words do matter: a systematic review on how different terminology for the same condition influences management preferences

Objectives Changing terminology for low-risk, screen-detected conditions has now been recommended by several expert groups in order to prevent overdiagnosis and reduce the associated harms of overtreatment. However, the effect of terminology on patients’ preferences for management is not well understood. This review aims to synthesise existing studies on terminology and its impact on management decision making. Design Systematic review. Methods Studies were included that compared two or more terminologies to describe the same condition and measured the effect on treatment or management preferences and/or choices. Studies were identified via database searches from inception to April 2017, and from reference lists. Two authors evaluated the eligibility of studies with verification from the study team, extracted and crosschecked data, and assessed the risk of bias of included studies. Results Of the 1399 titles identified, seven studies, all of which included hypothetical scenarios, met the inclusion criteria. Six studies were quantitative and one was qualitative. Six of the studies were of high quality. Studies covered a diverse range of conditions: ductal carcinoma in situ (3), gastro-oesophageal reflux disease (1), conjunctivitis (1), polycystic ovary syndrome (1) and a bony fracture (1). The terminologies compared in each study varied based on the condition assessed. Based on a narrative synthesis of the data, when a more medicalised or precise term was used to describe the condition, it generally resulted in a shift in preference towards more invasive managements, and/or higher ratings of anxiety and perceived severity of the condition. Conclusions Different terminology given for the same condition influenced management preferences and psychological outcomes in a consistent pattern in these studies. Changing the terminology may be one strategy to reduce patient preferences for aggressive management responses to low-risk conditions. Trial registration number PROSPERO: CRD42016035643.

How different terminology for ductal carcinoma in situ (DCIS) impacts women's concern and management preferences: A qualitative study.

OBJECTIVE There are increasing rates of mastectomy and bi-lateral mastectomy in women diagnosed with ductal carcinoma in situ (DCIS). To help women avoid decisions that lead to unnecessary aggressive treatments, there have been recent calls to remove the cancer terminology from descriptions of DCIS. We investigated how different proposed terminologies for DCIS affect womens perceived concern and management preferences. MATERIALS AND METHODS Qualitative study using semi-structured interviews with a community sample of 26 Australian women varying by education and cancer screening experience. Women responded to a hypothetical scenario using terminology with and without the cancer term to describe DCIS. RESULTS Among a sample of women with no experience of a DCIS diagnosis, a hypothetical scenario involving a diagnosis of DCIS elicited high concern regardless of the terminology used to describe it. Women generally exhibited stronger negative reactions when a cancer term was used to describe DCIS compared to a non-cancer term, and most preferred the diagnosis be given as a description of abnormal cells. Overall women expressed interest in watchful waiting for DCIS but displayed preferences for very frequent monitoring with this management approach. CONCLUSION Communicating a diagnosis of DCIS using terminology that does not include the cancer term was preferred by many women and may enable discussions about more conservative management options. However, womens preference for frequent monitoring during watchful waiting suggests women need more education and reassurance about this management approach.

Improving communication about cancer screening: moving towards informed decision making

For decades, public communications about cancer screening have used persuasive techniques with the aim of maximising the number of people being screened. However, perspectives have changed more recently to acknowledge that screening can lead to harm as well as benefit, and that it is important for service users to consider both. For some types of cancer screening, there is professional contention about whether benefits clearly outweigh harms. In light of this, an emerging trend in cancer screening communication is to try to support informed decision making - that is, to help people understand both the advantages and disadvantages of screening, allowing them to make individual decisions about their screening participation that reflect their informed preferences. In this review, we provide an overview of key theoretical and practical aspects of improving communication and supporting informed decision making about cancer screening, highlight relevant research and discuss future implications.

Renaming low risk conditions labelled as cancer

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

Effect of a Change in Papillary Thyroid Cancer Terminology on Anxiety Levels and Treatment Preferences: A Randomized Crossover Trial

Importance Given evidence of overdiagnosis and overtreatment of small papillary thyroid cancers (PTCs), strategies are needed to promote the consideration of less invasive treatment options for patients with low-risk PTC. Objective To determine the association of treatment preferences and anxiety levels for PTC with the terminology used to describe the condition. Design, Setting, and Participants This randomized crossover study involved a community sample of 550 Australian men and women 18 years or older without a history of thyroid cancer. Between March 16, 2016, and July 26, 2016, participants accessed an online study that presented 3 hypothetical but clinically realistic scenarios, each of which described PTC as papillary thyroid cancer, papillary lesion, or abnormal cells. Participants were exposed to all 3 scenarios with the different terminologies, and participants were randomized by the order (first, second, or third) in which they viewed the terminologies. Data analysis was conducted from September 1, 2016, to May 15, 2017. Main Outcomes and Measures Treatment choice (total thyroidectomy, hemithyroidectomy, or active surveillance), diagnosis anxiety, and treatment choice anxiety. Results Of the 550 participants who completed the online study and were included in the analysis, 279 (50.7%) were female and the mean (SD) age was 49.9 (15.2) years. A higher proportion of participants (108 [19.6%]) chose total thyroidectomy when papillary thyroid cancer was used to describe the condition compared with the percentage of participants who chose total thyroidectomy when papillary lesion (58 [10.5%]) or abnormal cells (60 [10.9%]) terminology was used. At first exposure, the papillary thyroid cancer terminology led 60 of 186 participants (32.3%) to choose surgery compared with 46 of 191 participants (24.1%) who chose surgery after being exposed to papillary lesion terminology first (risk ratio [RR], 0.73; 95% CI, 0.53-1.02) and 47 of 173 participants (27.2%) after being exposed to abnormal cells (RR, 0.82; 95% CI, 0.60-1.14) terminology first. After the first exposure, participants who viewed papillary thyroid cancer terminology reported significantly higher levels of anxiety (mean, 7.8 of 11 points) compared with those who viewed the papillary lesion (mean, 7.0 of 11 points; mean difference, –0.8; 95% CI, –1.3 to –0.3) or abnormal cells (mean, 7.3 of 11 points; mean difference, –0.5; 95% CI, –1.0 to 0.01). Overall, interest in active surveillance was high and higher levels of anxiety were reported by those who chose surgery, regardless of which terminology was viewed first (mean difference, 1.5; 95% CI, 1.0-1.9). Conclusions and Relevance Changing the terminology of small PTCs may be one strategy to reduce patients’ anxiety levels and help them consider less invasive management options. To curtail overdiagnosis and overtreatment in PTC, other strategies may include providing balanced information about the risks and advantages of alternative treatments. Trial Registration anzctr.org.au Identifier: ACTRN12616000271404

Association of Preferences for Papillary Thyroid Cancer Treatment With Disease Terminology: A Discrete Choice Experiment

Importance Given recent evidence of overdiagnosis and overtreatment of small papillary thyroid cancers (PTCs) and other low-risk cancers, strategies are needed to help patients consider less invasive treatment options. Objectives To determine which factors influence treatment preferences for patients with PTC, and the trade-offs in treatment factors people are willing to accept, and to understand how terminology influences preferences and benefit-harm trade-offs. Design, Setting, and Participants Preferences in PTC treatment were evaluated using a discrete choice experiment (DCE) conducted as a web-based survey using an existing public online research panel. Participants were randomized to receive 1 of 2 frames of information based on the terminology used to describe the condition: “cancer” or “lesion.” Participants chose between 3 treatment options for PTC (thyroidectomy, hemithyroidectomy, and active surveillance). Analyses were conducted using a mixed logit model. Main Outcomes and Measures The main outcome variable was treatment preference; attributes of treatment options and sociodemographic characteristics were explanatory variables. Results The DCE was completed by 2054 participants (993 [48.3%] men and 1061 [51.7%] women; mean [SD] age, 46.0 [16.5] years) with no history of thyroid cancer. Participants preferred options with less frequent follow-up, lower out-of-pocket costs, lower chances of having voice and calcium level problems, and a lower risk of developing invasive thyroid cancer and of dying of thyroid cancer. When trading benefits against harms, participants were willing to accept a higher number of extra patients experiencing adverse effects to avoid a thyroid cancer death when the condition was described as a cancer compared with a lesion. Specifically, participants for whom the condition was described as a cancer were willing to accept more patients requiring lifelong medication (mean, 273; 95% CI, 207-339 vs mean, 98; 95% CI, 66-131), experiencing calcium problems (mean, 110; 95% CI, 77-144 vs mean, 56; 95% CI, 55-58), and fatigue (mean, 958; 95% CI, 691-1224 vs mean, 469; 95% CI, 375-564). For both the cancer and lesion terminology, health literacy consistently was associated with preferences for treatment options. Those with lower health literacy had a significantly lower preference for less invasive treatment options. Conclusions and Relevance This study makes an important contribution to understanding how attributes of treatment options, terminology, and patient characteristics, in particular health literacy, influence treatment decision making for PTC. As a result of increasing evidence of the indolent nature of PTC and other low-risk cancers, strategies to deal with potential overtreatment are critically needed. Trial Registration Australian New Zealand Clinical Trials Registry: ACTRN12617000066381