Improving communication about lesions at low risk of becoming cancer

Funding

Canadian Cancer Society

Aim

Cancer screening can identify “low-risk” lesions in the breast, bladder, colon/rectum, lung, prostate or thyroid that may never progress to invasive cancer and may be offered no treatment or active surveillance, or 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 psycho-social outcomes despite high cancer-related survival rates. For some of these lesions, international expert groups changed the label to remove words referring to cancer. However, patients remained confused about whether they had cancer or not, and anxious about their health. This study examined patient and physician views about ideal labels for low-risk lesions, and language or other strategies to help explain low-risk lesions to patients.

Key Findings

  • A narrative review of 13 studies (7 thyroid, 4 prostate, 2 cervix) published from 2003 to 2021 revealed a lack of research on preferences for low-risk lesion labels and language, and associated rationale. Most studies explored label preferences among healthy adults (none involved persons who had low-risk lesions) and only two explored preferences among doctors. Overall, among healthy adults with cervix or prostate lesions, use of the term “cancer” rather than “nodule” or “lesion” resulted in greater anxiety, higher perceived disease severity, and selection of more invasive treatment. Physicians did not support removing “carcinoma” from thyroid lesion labels despite awareness that the label triggered patient anxiety [Patient Education and Counseling 2024;126:108321]
  • We simultaneously reviewed 21 studies published from 2008 to 2023 investigating preferred labels, language and other strategies to discuss low-risk forms of ductal carcinoma in situ of the breast (DCIS), revealing a scarcity of research involving those with DCIS or physicians, conflicting views between women and doctors about ideal labels, and several ways to improve communication about DCIS, conflicting opinions on labels from patients and physicians [article forthcoming]
  • Interviews with patients who had low-risk lesions of the bladder, cervix or prostate; and 13 physicians of different specialties who treat these conditions revealed that patients preferred “abnormal cells”, particularly when first learning about the diagnosis. In contrast, physicians thought that patients understood that labels referring to cancer implied low risk for cancer progression, and used such 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 16 strategies that could improve communication about low-risk lesions including language (e.g. plain language, situate low-risk lesions on cancer spectrum) and complementary communication strategies (e.g. longer appointments, visual aids, connect patients with support services or groups). [BMJ Open 2024;citation soon available] [PDF infographic summary]
  • Simultaneous interviews with 12 women who had DCIS and 15 physicians revealed similar results [article forthcoming]
  • We surveyed 17 women who had DCIS and 20 physicians of differing specialty from across Canada to prioritize 42 items (labels, language and other strategies) that could improve communication about DCIS. Women and physicians agreed on 3 language approaches (use plain language, distinguish DCIS from invasive breast cancer, specify the risk of recurrence and spread) and 9 other strategies to help discuss DCIS (e.g. use visual aids, provide or refer women to culturally-tailored DCIS-specific information, ensure physicians can access interpreters). Women were more enthusiastic than physicians about referring to abnormal cells rather than DCIS, and scheduling longer or follow-up visits to address concerns. [article forthcoming] [PDF infographic summary]

Impact

Advocacy for, and use of preferred labels, language and other strategies may improve communication about DCIS, reducing confusion and anxiety among women with DCIS, and improving their longer-term quality of life. This 2-page policy brief summarizes recommendations and implications [PDF file]