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Abstract
Objectives We explored how to improve communication about low-risk lesions including labels, language and other strategies.
Design Qualitative description and thematic analysis to examine the transcripts of telephone interviews with patients who had low-risk lesions and physicians; and mapping to Communication Accommodation Theory to interpret themes.
Setting Canada
Participants 15 patients: 6 (40%) bladder, 5 (33%) prostate and 4 (27%) cervix lesions; and 13 physicians: 7 (54%) cervix, 3 (23%) bladder and 3 (23%) prostate lesions.
Main outcome measures Patient and physician views of labels, language and other strategies to improve communication about low-risk lesions.
Results Patients and clinicians held discordant views about low-risk lesion label impact, preferences and rationale. All labels prompted confusion and anxiety among patients. In contrast, physicians perceived that patients understood that labels they used across all label categories (abnormal, precursor-to-cancer and cancer) implied low risk for cancer progression. Patients preferred abnormal cells, particularly when first learning of their diagnosis, and desired additional information to distinguish their diagnosis from cancer and justify treatment. In contrast, physicians favoured precursor-to-cancer and cancer labels out of habit, to match labels that patients saw elsewhere (online, charts) and to convince patients to attend follow-up and treatment visits. However, patients and physicians largely agreed on the need for 16 strategies that could improve communication about low-risk lesions including language (eg, plain language, situate low-risk lesions on cancer spectrum) and complementary communication strategies (eg, longer appointments, visual aids, connect patients with support services or groups).
Conclusions The findings build on prior research by revealing that modifying labels is not the only or best strategy needed to improve communication about low-risk lesions. Ongoing research should examine how best to implement the strategies recommended by patients and physicians.
- Health Services
- Qualitative Research
- Oncology
- Patient-Centered Care
Data availability statement
All data relevant to the study are included in the article or uploaded as supplementary information.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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STRENGTHS AND LIMITATIONS OF THIS STUDY
We employed rigorous methods, including purposive sampling to involve key informants with diverse characteristics, achieved thematic saturation and complied with standards for conducting and reporting qualitative studies to optimise rigour.
A multidisciplinary research team including patients who had low-risk lesions informed study design, and data collection and analysis.
To interpret the results, we mapped findings to Communication Accommodation Theory, a well-established theoretical framework for analysing discord in healthcare communication.
As volunteers, patient and physician views may be biased.
The results may not be transferrable to patients with other types of low-risk lesions or the physicians who care for them; or to patients or physicians in other jurisdictions with healthcare systems that differ from Canada.
Introduction
Cancer screening can identify ‘low-risk’ lesions that may never progress to invasive cancer. This is true of lesions associated with the most common types of cancer (eg, breast, prostate, lung, colorectal, bladder, thyroid, etc), representing a considerable proportion of cancer-related diagnoses.1 2 With no established definition, low-risk lesions refers to lesions: (a) with a low probability (eg, <10%) of progression to invasive cancer that may be offered no treatment or active surveillance, or (b) that when treated, are unlikely to recur. Patients diagnosed with low-risk lesions experience anxiety levels comparable to those diagnosed with more aggressive or advanced cancers, contributing to poor long-term psychosocial outcomes despite high cancer-related survival rates.3 4 For example, approximately 20% of those with ductal carcinoma in situ develop invasive breast cancer and the 20 year breast-cancer specific mortality is low at 3.3%.5 6 Physicians reported difficulty in explaining its low risk while justifying treatment.7–9 Affected women reported suboptimal communication from physicians, causing confusion and anxiety, which persisted years after treatment, leading to poor physical and psychological outcomes, and reduced quality of life.10–12
One approach to alleviate confusion and anxiety related to communication about low-risk lesions involves changing the label to remove terms suggestive of or synonymous to cancer, because cancer-related terms are known to prompt anxiety about invasive treatment, unpleasant treatment-related side effects or mortality among affected persons or well members of the public.13 14 For example, cervical intraepithelial neoplasia grade 1 was changed to low-grade squamous intraepithelial lesion (LSIL) in 2001 at a National Cancer Institute meeting involving 44 professional societies from 20 countries.15 Papillary carcinoma grade 1 urothelial tumour was changed to urothelial neoplasia of low malignant potential at a 1998 WHO-International Society of Urological Pathology meeting.16 However, even the modified labels lacked meaning to patients. For instance, women with LSIL did not understand if they had or would develop cancer, causing anxiety about their prognosis and confusion about delayed or prescribed treatment.17 Men and women diagnosed with urothelial neoplasia of low malignant potential expressed similar concerns.18 Thus, even if nomenclature omitted cancer-related terms (eg, explicit use of ‘cancer’ or labels synonymous to or suggestive of cancer such as neoplasia), there may still be a need for accompanying language or other communication strategies that better explain the meaning or implications of low-risk lesions to affected persons.
Persons diagnosed with low-risk lesions are suffering from needless confusion and anxiety that could potentially be alleviated through refined labels and language.19 However, little prior research investigated the preferences of patients or physicians for low-risk lesion labels or language. In particular, no studies have fully investigated the rationale for preferences including perceived benefits and potential harms associated with label or language options. The overall aims was to explore views about existing and alternative labels and language for low-risk lesions, knowledge that could inform improved communication about low-risk lesions in the future. To achieve this aim, the specific objective was to interview patients and physicians about label and language preferences for low-risk lesions along with rationale.
Methods
Approach
We chose to employ a qualitative study design, which is suitable for exploring under-researched concepts by collecting in-depth information to understand the perspectives of persons with lived experience.20 More specifically, we used qualitative description to explore the experiences and views of patients and physicians.21 This approach is widely used in health services research as a way to gather and summarise explicit information on challenges and possible solutions. We then mapped those concrete ideas to theory as a way to generate deeper meaning. To optimise rigour, we complied with the Consolidated Criteria for Reporting Qualitative Research; for example, rationale for methodological orientation, transparency about interviewer characteristics, explicit details about sampling and recruitment, description of data collection and analysis and further analysis of themes using a theoretical framework.22
Sampling and recruitment
We used purposive sampling to recruit participants with a range of demographic and disease-related characteristics that could influence their perspectives. Eligible patients included adults aged 18+ from across Canada with a self-reported diagnosis of a low-risk lesion of the bladder, cervix or prostate in the last 5 years who varied in non-mutually exclusive fashion by age, gender and years since diagnosis. We chose these three types of lesions because they affect both women and men, are among the most common types of cancer-related lesions1 2 and underwent label changes in an attempt to distinguish the low-risk form from invasive cancer.15 16 Low-risk lesions included bladder—stage 0 or grade 1 bladder cancer, bladder carcinoma in situ, non-invasive papillary carcinoma or urothelial neoplasia of low malignant potential; cervix—cervical dysplasia, LSIL, high-grade squamous intraepithelial lesion (HSIL) or atypical squamous cells of undetermined significance (ASCUS) and prostate—grade group 1 or Gleason grade 6 prostate cancer. Eligible physicians from across Canada included those who interact with patients diagnosed with low-risk lesions of the bladder, cervix or prostate, who varied in non-mutually exclusive fashion by specialty, and self-reported career stage and gender. We recruited participants through 263 charitable (eg, Canadian Cancer Society), advocacy (eg, Bladder Cancer Canada), professional (eg, Canadian Association of Surgical Oncology) and support (eg, Gilda’s Club) organisations that agreed to share a study information sheet with clients or members by email instructing interested persons to contact the study coordinator. We also identified 467 physicians of various specialties that see patients with bladder, cervical or prostate lesions on the websites of Canadian medical schools. It is not possible to establish the reach of these organisations and individuals, thus we cannot specify the precise number of people invited to participate, but intense recruitment efforts likely reached hundreds of patients and physicians. We aimed to recruit four patients and four physicians for each type of low-risk lesion (n=24). We achieved thematic saturation, monitored prospectively with data collection and analysis and confirmed by discussion among the research team, after 12 patient and 10 physician interviews.
Data collection
Online supplemental file 1 shows the semistructured interview guide. We asked about three main concepts: labels used and any impact of those labels; alternative labels to use or avoid along with rationale (benefits/harms) and language or other strategies that support communication and understanding of low-risk lesions. We invoked prompts as needed depending on how participants responded. We conducted interviews by telephone between May and November 2023. Mean interview length was 22 min (range 13–38 min). MSL (woman MPH-trained Research Associate) and CB (woman MPH Graduate Student) jointly conducted the first interview, while ARG (woman PhD-trained Senior Scientist/Professor with qualitative research experience) monitored, followed by a joint discussion of how to optimise question asking and prompting. Thereafter, CB and MSL independently conducted all subsequent patient and physician interviews, respectively. All interviews were audio-recorded and transcribed.
Supplemental material
Data analysis
We used thematic analysis and constant comparison to inductively identify, expand or merge themes reflecting explicit patient and physician views about labels, language and other strategies to improve communication in transcripts of recorded interviews,23 24 and develop a codebook of themes and exemplar quotes, using Microsoft Office Word and Excel to manage data. As a pilot test, CB, MSL and ARG independently coded the first two interviews for both patients and physicians, then compared and discussed coding to establish a mutual understanding of how to identify and establish themes. CB and MSL thereafter independently coded all patient and physician transcripts, respectively, periodically consulting with ARG to discuss themes and resolve uncertainties. ARG independently reviewed all coding. We used summary statistics to describe participants, and text and tables to describe key themes. We compared themes within and across groups to identify similar and differing perspectives.
We employed Communication Accommodation Theory (CAT) to further analyse, summarise and visualise key findings and the relationship between themes.25 CAT has been used since 1970 to assess communication behaviour. CAT explains how individuals’ beliefs and motivations influence interactions with others in a way that either does (convergent) or does not (divergent) accommodate the communication needs of the other party. Accommodation occurs through five strategies: approximation (patterning one’s language and communication more similar to the other), interpretability (accommodating another’s ability to understand the conversation), interpersonal control (adapting communication based on role and power), discourse management (adjusting communication based on needs of the other party) and emotional expression (responding to the other’s emotional and relational needs). We mapped themes that emerged from initial content analysis onto CAT domains, resulting in higher level themes reflecting CAT domains. For example, we organised details about labels used and impact of those labels under Initial Orientation (beliefs and experiences), preferences and rationale for particular labels under Psychological Accommodation (motivations and desires) and language and other strategies used by physicians as reported or recommended by participants under Accommodating Tactics.
Patient and public involvement
This study was conducted to supplement an umbrella study involving interviews with patients and physicians about label preferences and rationale for ductal carcinoma in situ of the breast. Those results will be published elsewhere. Prior research involving interviews with 35 women and 46 physicians regarding communication about ductal carcinoma in situ revealed confusion and anxiety on the part of women, and challenges among physicians to explain ductal carcinoma in situ, which motivated the current study.9 12 In addition, the current study engaged three women advisors who had breast ductal carcinoma in situ. These advisors reviewed and contributed to the research proposal prior to funding; once funded, met virtually to review and further discuss the research plan; reviewed and suggested edits to patient interview questions and reviewed results and this manuscript to suggest edits for clarity. We provided advisors with a monthly stipend for a year to compensate for about 2 hours of time per month.
Results
Participant characteristics
Table 1 summarises participant characteristics. Of 15 patients interviewed, 40.0%, 33.3% and 26.7% were affected by bladder, prostate and cervix lesions; 60.0% were between the ages of 45 and 65; 53.3% had been diagnosed and treated between 2 and 5 years prior to the interview; 60.0% were men and 80.0% were Caucasian/White. Of 13 physicians interviewed, 53.8%, 23.1% and 23.1% discussed cervix, bladder and prostate lesions, respectively; 61.5 % were mid-career and 53.8% were men. Physician specialty included obstetrician gynaecologist (30.8%), family physician (23.1%), urologic oncologist (15.4%), urologist (15.4%), gynecologic oncologist (7.7%) and radiation oncologist (7.7%).
Participant characteristics
Interview findings
Online supplemental files 2 and 3 provide all data (themes and quotes) from interviews with patients and physicians, respectively. Key themes are discussed here, referring to summary tables and illustrated with exemplar quotes. Physician quotes are distinguished from patient quotes by mention of the physician’s specialty in the bracketed anonymous identifier.
Supplemental material
Supplemental material
Label impact
Table 2 lists labels used by physicians as reported by both patients and physicians, and summarises the impact of those labels as reported by patients and perceived by physicians. Three categories of labels emerged, with multiple labels used in each category: abnormal cells (eg, atypical), precursor to cancer (eg, precancer, stage 0 cancer) and cancer (eg, tumour, low-risk cancer and non-invasive cancer). These label categories and labels were used across all three types of lesions (ie, bladder, cervix and prostate). Hence, physicians are using a large number of labels to refer to low-risk lesions; and neither patients nor physicians viewed the multitude of labels as beneficial, advocating for consistency.
Labels used by physicians and impact on patients
Now it’s only getting a little confusing again because the grade group is already an attempt … at trying to put another label on this … I haven’t researched grade group 1 the same as I did Gleason 6. I don’t know whether it’s identical or whether it’s a combination of something. So, the language has only been, for me, more complicated with another term than simplified. (02 patient prostate)
Sometimes it’s quite difficult to interpret all these different acronyms and I would love one single one … so that we have some way of being able to just say you have that. (17 family physician cervix)
If it was termed, for example, pre-cancerous or non-cancerous. The only problem is that it has to be very consistent. It would have to really be an accepted change throughout the whole community. We can’t have some people calling it cancer and some people not calling it cancer. (28 urologic oncologist prostate)
Patients with bladder, cervix and prostate lesions reported the same two negative impacts regardless of label used by physicians across all three label categories. One theme was confusion about whether they had cancer. A second theme was anxiety about the severity and health implications of their diagnosis given confusion about the meaning of the label. However, compared with patients whose physician used an abnormal or precursor label, more patients whose physician used a cancer-related label reported feeling confusion and anxiety, and also shock.
The moment he said it (referring to a cancer-related label), I just had trouble remembering anything after that. I just sort of went into a fog and was having great deal of difficulty focusing and trying to listen to anything he said after that. (12 patient bladder)
In contrast to patients, most physicians perceived that patients understood that labels they used in all three categories (ie, abnormal, precursor and cancer) referred to low-risk lesions, and thought that this provided patients with reassurance or relief. At the same time, a few physicians thought that patients would have negative feelings regardless of label used.
I often find that they’re relieved when they hear that it is a non-invasive cancer. (23, urologic oncologist bladder)
Patients who have health anxiety are, generally speaking, kind of anxious regardless of what we tell them or what the diagnosis is, right? (18 OB/GYN cervix)
Rationale for label preferences
Table 3 summarises the benefits and harms perceived by patients and physicians of labels they suggested be used or avoided in each of the abnormal, precursor and cancer label categories for each of the three types of lesions. Most patients preferred ‘abnormal cells’ over other labels because it was easy to understand, particularly on initial diagnosis and mitigated anxiety. Physician label preferences varied within lesion type (bladder, cervix and prostate) and category (abnormal, precursor and cancer), but frequently reflected habit formed as a result of training, and desire to convince patients of the need for treatment and follow-up.
Perceived benefits and harms of labels for low-risk lesions
Abnormal
Common to bladder, cervix and prostate lesions, most patients said that ‘abnormal cells’ was easy to understand, could alleviate anxiety and appropriate for initial appointments to share and discuss the diagnosis. A few patients said that this label was too general, did not clarify risk and would raise concern among patients about advanced cancer. No patients recommended the use of labels for abnormal cervix lesions such as cervical dysplasia, LSIL, HSIL or ASCUS.
I like abnormal cells of the bladder. It’s easier to understand for the common person … Abnormal cells of the bladder makes me feel a little better to be honest … I think abnormal cells of the bladder makes the most sense to kind of ease a person’s mind. (08 patient bladder)
Physician views varied across and within lesion type. For bladder lesions, some physicians said that ‘abnormal cells’ was better than other labels because it would reduce anxiety yet still convey the need for follow-up visits or treatment. None perceived harms associated with ‘abnormal cells’. For cervix lesions, physician views varied. In contrast to patients with cervix lesions, some said that cervical dysplasia, LSIL, HSIL or ASCUS were better than ‘abnormal cells’ because they would not prompt anxiety by distinguishing the diagnosis from cancer, and match labels that patients saw elsewhere (eg, charts and online information) to reduce confusion. These physicians thought that ‘abnormal cells’ was too general. Yet other physicians thought that cervical dysplasia, LSIL, HSIL or ASCUS labels were too complex, did not clarify risk and understood by patients only after further discussion. With respect to prostate lesions, no physicians recommended this label, or articulated benefits or harms associated with ‘abnormal cells’.
So I use the term pre-cancer cells or dysplasia … so when they go home and they read on the Internet, they understand the terminology that’s being used and they’re not confusing it for what does not apply to them. (24 OB/GYN cervix)
Precursor
Common to bladder, cervix and prostate lesions, the majority of patients did not favour precursor labels such as ‘precancer’ because they caused anxiety and required further discussion to clarify meaning. A single patient (cervix) said that the ‘precancer’ label was self-explanatory.
I think precancerous feels kind of stressful and anxiety inducing (13 patient cervix)
Physicians within and across lesion types disagreed on benefits and harms associated with precursor labels. Some physicians thought that ‘precancer’ was suitable for bladder and cervix lesions but for different reasons. In the bladder context, ‘precancer’ was thought to distinguish the condition from cancer as a way to alleviate anxiety. In the cervix context, some physicians thought that the ‘cancer’ portion of ‘precancer’ ensured patients attended follow-up visits or treatment. In contrast, some physicians speaking to bladder and cervix lesions said that labels such as ‘precancer’ or ‘stage 0 cancer’ prompted anxiety because patients might perceive that they had a more advanced cancer, which necessitated further discussion to clarify the meaning of these labels. No physicians recommended precursor labels for prostate lesions, or identified associated harms or benefits.
And if you use precancerous, I find it’s a little more effective in communicating this is the step before cancer, and if we don’t do something about it, you might end up having a cancer. (20 gynecologic oncologist cervix)
Cancer
Common to bladder, cervix and prostate lesions, no patients identified benefits of cancer-related labels and all identified harms. Regardless of label (eg, grade 1 bladder cancer, bladder carcinoma in situ, non-invasive papillary carcinoma for bladder lesions; low-risk or low-grade cancer for cervix lesions; grade group 1 or Gleason 6 for prostate lesions), patients said these labels suggested advanced cancer, caused anxiety and required further discussion to clarify risk of cancer.
It’s difficult to really know what it means. Gleason 6 is a result of a 3 plus 3. It’s just gibberish when you hear it for the first time. And then to try to teach yourself what it really means, it takes a lot of effort (02 patient prostate)
Physician views varied about the benefits and harms of cancer-related labels within and across types of lesions. For bladder lesions, some physicians said that retaining the word ‘cancer’ ensured that patients attended follow-up visits or treatment, and labels such as ‘non-invasive cancer’, ‘low-risk cancer’ or ‘grade 1 bladder cancer’ would reassure patients that their cancer was not aggressive. For cervix lesions, some physicians thought that the use of labels such as ‘low-grade carcinoma’ or ‘high-grade carcinoma’ would match what patients saw in medical records or online information. For prostate lesions, some physicians thought that labels such as ‘grade group 1 cancer’ or ‘low-risk cancer’ were easy to understand and would distinguish the condition from cancer. In contrast, some physicians for each of bladder, cervix and prostate lesions thought that cancer-related labels caused anxiety because patients perceived that they had advanced cancer and this could only be clarified through further discussion.
The biggest benefit is that 1 out of 5 (referring to grade group) is meaningful to people in terms of being small. It’s the lowest and it’s also small … it’s the lowest number on the scale of aggressiveness (25 urologist prostate)
Language and other strategies
Table 4 lists the accompanying language and other strategies used by physicians to assist in explaining the meaning of labels as reported by participating patients and physicians along with exemplar quotes. Both language (eg, situate low-risk lesions on a cancer spectrum, explicitly distinguish low-risk lesions from invasive cancer) and other strategies (eg, visual aids, take home information) were common to bladder, cervix and prostate lesions. However, many patients said their doctor did not explain labels with additional language or other strategies.
Language and other strategies used to explain low-risk lesions
With respect to language viewed as helpful, a single patient said their doctor used plain language and another that their doctor described the diagnosis as common. Some patients said their doctor described treatment options, risk of recurrence and stage or grade as a way to explain that their diagnosis was at the opposite or low end of the cancer continuum or spectrum. Physicians expressed the use of similar language. In addition, most physicians said that they explicitly distinguished low-risk lesions from invasive cancer and used analogies to describe lesion characteristics.
Regarding other strategies viewed as helpful, some patients said that doctors used visual aids, and a few said that their doctor gave them take-home educational material, or took extra time to answer questions and discuss concerns. Physicians reported using similar strategies. In addition, some physicians said that they arranged follow-up visits for further discussion, referred to pathology or radiology reports to supplement the discussion and asked patients to articulate specific concerns.
However, many patients said that their doctor did not provide further information or employ other strategies to explain their diagnosis, its potential impact on their health, treatment options or likely outcomes. As a result, patient understanding of their condition varied. While a few said they were satisfied with how physicians explained their diagnosis, several others said they understood their diagnosis and its meaning only after conducting their own searching.
Really understanding where the cancer was at, the different types of cancer, I actually had to look it up afterwards to really understand it. (11patient bladder)
Suggestions to improve communication
Table 5 lists strategies recommended by patients and physicians that could improve communication about low-risk lesions. These strategies were common to bladder, cervix and prostate lesions.
Participant suggestions to improve communication about low-risk lesions
Patients and physicians agreed on several strategies: use non-triggering labels and language agreed to by the medical community for consistency in implementation, extend the length of appointments to accommodate discussion and questions; provide physicians with visual aids to assist in communicating with patients; provide patients with, or refer them to other sources of supplemental information and connect patients with support groups or services. In addition, a single physician suggested providing patients with information about their diagnosis in advance of appointments, which they perceived would optimise discussion during appointments; and two physicians said they effectively communicated with their patients about low-risk lesions and therefore did not require any form of assistance.
I think a standardized patient-centred language that is consistent across different specialists … would be helpful. (23 urologic oncologist bladder)
I honestly feel like I do a comprehensive job … I don’t feel that I’m lacking for any specific resource. (25 urologist prostate)
Communication accommodation
Figure 1 displays key themes mapped to CAT. Patients and physicians held conflicting initial orientations. Physicians perceived patients to understand that the wide range of abnormal, precursor and cancer labels they used referred to low-risk lesions distinct from cancer; yet patients did not, and as a result, patients experienced confusion and anxiety.
Communication accommodation for low-risk lesions Word document Box and line graphic showing relationship between the results according to Communication Accommodation Theory.
Psychological accommodation was divergent, meaning that different motivations influenced patients and physicians, and as a result, physicians did not address the communication needs of patients with low-risk lesions. Physicians purposefully chose precursor-to-cancer and cancer-related labels for several reasons: to ensure that patients did not dismiss the diagnosis, and complied with follow-up visits and/or treatment; to match labels patients might see elsewhere (eg, online, medical records) and because those labels were habitual, having been learnt during training. In contrast, most patients preferred that physicians refer to abnormal cells, and provide further information to distinguish low-risk lesions from cancer and explain the need for treatment. Physicians reportedly did not always provide additional clarifying information, and consequently, many patients did their own research to understand the diagnosis.
Despite these tensions, patients and physicians largely agreed on the need for 16 accommodating tactics (listed in figure 1) to improve communication about low-risk lesions that mapped to all CAT domains: approximation, interpretability, interpersonal control, discourse management and emotional expression. In addition, patients and physicians viewed multiple labels as detrimental, and physicians advocated for widespread consensus on labels and language for low-risk lesions to promote consistent implementation and use.
Discussion
Patients and physicians held discordant views about low-risk lesion label impact, preferences and rationale. Findings were similar for bladder, cervical and prostate lesions. All labels prompted confusion and anxiety among patients. In contrast, physicians perceived that patients understood that labels they used across all label categories (abnormal, precursor-to-cancer and cancer) implied low risk. Patients preferred abnormal cells over precursor-to-cancer and cancer labels. In contrast, physicians favoured precursor-to-cancer and cancer labels. Despite discordant views, patients and physicians largely agreed on the need for 16 strategies that could improve communication about low-risk lesions.
This study has several strengths. We employed rigorous methods, including purposive sampling to involve key informants with diverse characteristics, and complied with standards for conducting and reporting qualitative studies to optimise rigour.20–24 A multidisciplinary research team including patients who had low-risk lesions informed study design, and data collection and analysis. To interpret the results, we mapped findings to CAT, a well-established theoretical framework for analysing discord in healthcare communication.25 We achieved thematic saturation and results were similar across three types of lesions, signalling sufficient recruitment. We acknowledge several limitations. As volunteers, patient and physician views may be biased. In particular, patients unhappy with communication may have agreed to participate. We did not verify patient’s self-reported claims of having been diagnosed with a low-risk cervical, bladder or prostate lesion; however, even if their lesion was higher grade, views about labels, language and other strategies to improve communication are likely relevant. In keeping with the nature of a qualitative study, we interviewed a small number of patients and physicians for each of bladder, cervix and prostate low-risk lesions. Hence, the results may not be broadly generalisable or transferrable to patients with other types of low-risk lesions or the physicians who care for them. This work took place in Canada; hence, the results may not be relevant to patients or physicians in other jurisdictions with differing healthcare systems.
This study contributes to gaps in prior research on cancer communication, which largely focused on how to deliver unfavourable news to those with late-stage or aggressive cancers.26–28 Little prior research examined preferences for, or the impact of discussing low-risk lesions despite the existence of tools such as SPIKES, a six-step protocol for delivering bad news.29 While SPIKES recommends using lay language rather than technical terms, avoiding excessive bluntness such as stating you have cancer and need immediate treatment, and giving information in small chunks with periodic assessment of comprehension, it does not specify labels, language or other strategies that could assist physicians in achieving these recommendations.29 Similar to our study, interviews with 26 healthy Australian women about a hypothetical diagnosis of ductal carcinoma in situ of the breast revealed high concern regardless of label used to name it, and most preferred that it be named abnormal cells.30 Another study of 269 healthy Australian women found that those given a hypothetical scenario about ductal carcinoma in situ first referred to as abnormal cells and later as preinvasive breast cancer cells articulated greater concern and preference for treatment versus watchful waiting compared with women who learnt of the labels in reverse order.31 Similar to our study, this research revealed the potentially negative impact of precursor-to-cancer labels over abnormal cells. A narrative review of research published up to February 2023 included only six studies that evaluated preferred labels for low-risk prostate or thyroid lesions among healthy adults, revealing that use of the label ‘cancer’ rather than ‘nodule’ or ‘lesion’ resulted in greater anxiety, perceived disease severity, choosing invasive treatment and acceptance of associated adverse effects.32 In the same review, two studies assessed preferences for low-risk thyroid lesion labels among physicians, revealing that they did not support eliminating the term ‘cancer’, but did not examine the rationale.32 In contrast to prior calls for changes in nomenclature as the sole approach to improving communication,19 this study generated detailed insight on how by: identifying three categories of labels, comparing perceived benefits and harms of different labels between patients and physicians to identify key areas of discord; and revealing language and other strategies to improve communication regardless of label.
These findings raise numerous implications for policy and practice. Some patients and physicians viewed the variable use of multiple labels as detrimental, and physicians advocated for widespread consensus on labels and language for low-risk lesions. This has typically been the domain of nomenclature groups, many with international scope. However, that process appears to be largely based on medical expert opinion, subject to bias, and not informed by patient preferences,15 16 resulting in new labels that lacked meaning to patients, doing little to alleviate confusion and anxiety.17 18 Recent calls to improve tumour classification encouraged greater reliance on systematic reviews of evidence, but did not refer to integrating patient preferences,33 which has become standard in healthcare research, and guideline and policy development such that considerable guidance is available for doing so.34 35 Nomenclature agencies could update their decision-making process to be more patient-centred by considering evidence of patient preferences, such as that generated in this study, and/or engaging patients in their meetings. Doing so may yield labels that are both meaningful to patients and accepted by physicians. Then, professional societies could encourage use of the updated nomenclature among members.
Discordance in patient and physician expectations (initial orientation) and values/approaches (psychological accommodation) for communication was common across bladder, cervix and prostate cancer contexts. This may not be surprising given prior research showing that physicians lacked insight on satisfaction with communication during consultations with patients who had different types of cancer.36
This research identified 16 strategies to improve patient–physician communication about low-risk lesions regardless of labels used. Such guidance could benefit physicians given documented lack of training in person-centred care and in discussing a cancer diagnosis, which contributes to emotional exhaustion and burnout.37 38 However, further research is needed to assess how best to implement these strategies, and if and how these strategies improve communication about low-risk cancer and related outcomes. For example, a single physician recommended providing patients with information about their diagnosis in advance of appointments. Prior research suggests that patients in the USA and in Norway preferred learning of a cancer diagnosis in person,39 40 yet a more recent review found that patients experience the same level of distress regardless of whether they receive bad news in person or by telephone, suggesting that perhaps the way the news is delivered is more important than setting.41 This finding underscores the importance of the labels, language and other strategies identified in this study, which can inform the way news is delivered regardless of mode. Further research is needed to thoroughly examine the potential benefits and harms of this and other strategies, particularly to suit the nuances of different patient languages and cultures.
In this study, patients and physicians recommended lengthier appointments so that physicians could provide more details, answer questions and address concerns. No research has explored the ideal visit length for disclosing a cancer diagnosis. While many physicians can control clinic visit length, shorter visits accommodate the large volume of patients that most physicians see. A multidisciplinary approach is another way to address the information needs of patients with low-risk cancer to overcome the limitations of imposed visit length. In this model of care, the treating physician might initially disclose the diagnosis and treatment options to patients, and other types of healthcare professionals such as nurse practitioners or social workers could further discuss the implications with patients to address their questions and concerns. Prior research demonstrated the implementation and beneficial outcomes of multidisciplinary cancer conferences.42 43 Ongoing research should investigate the benefits, feasibility and optimal design of multidisciplinary cancer disclosure visits. Future research should develop tools that help physicians or other team members to assess whether a person has understood risk-based discussion, as prior research demonstrated that physician perceptions of patient beliefs significantly differed from patients’ actual beliefs and aligned more closely to their own beliefs;44 and informational resources to which physicians could refer patients, as existing resources may not distinguish low-risk lesions from invasive cancer.45 Overall, endorsement and adoption of the labels, language and other strategies that emerged from this research by nomenclature agencies, professional societies and physicians may lead to enhanced person-centred cancer care, which refers to an approach that engages patients by fostering a healing relationship, exchanging information, exploring emotions, managing uncertainty, sharing decisions and supporting self-management,46 47 resulting in numerous proven experiential and clinical benefits for patients.48 49
In conclusion, this study builds on prior limited research that advocated for label changes as a way to alleviate confusion and anxiety among patients diagnosed with low-risk lesions. The results confirm the need for alternative labels, with abnormal cells preferred by patients over the myriad of precursor-to-cancer and cancer-related labels currently used by physicians. The reasons given by physicians for use of these labels were not person-centred: habit, to match labels that patients might see elsewhere, to ensure that patients comply with recommended follow-up or treatment. However, patients and physicians largely agreed on the need for consistent use of accompanying language and other strategies to explain a low-risk diagnosis so that patients understand how it differs from cancer and why treatment is needed. Future research can assess how best to implement these strategies.
Data availability statement
All data relevant to the study are included in the article or uploaded as supplementary information.
Ethics statements
Patient consent for publication
Ethics approval
This study involves human participants. The University Health Network Research Ethics Board approved this study (#22-5958). Participants gave informed consent to participate in the study before taking part.
References
Footnotes
Contributors ARG acquired funding for this study. ARG, NJLH and FCW conceptualised the study. GC, AF, RK, NJLH, FCW and ARG planned the study and facilitated recruitment. MSL and CB assisted with data collection. All authors assisted with data analysis, drafting and review of the manuscript and approval of the final version. The corresponding author affirms that the manuscript is an honest, accurate and transparent account of the study being reported; that no important aspects of the study have been omitted; and that any discrepancies from the study as planned (and, if relevant, registered) have been explained. Guarantor is ARG.
Funding This research was supported by the Canadian Cancer Society. The funders had no role in considering the study design or in the collection, analysis, interpretation of data, writing of the report, or decision to submit the article for publication.
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.
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