Preferred labels and language to improve communication about lesions at low risk of progressing to cancer: qualitative interviews with patients and physicians

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.