Article Text
Abstract
Introduction Ductal carcinoma in situ (DCIS) can progress to invasive breast cancer, but most low-risk lesions will not do so during a woman’s lifetime. It is not yet possible to accurately determine at diagnosis which lesions will progress if left untreated. Therefore, all DCIS patients undergo surgery with/without radiotherapy. To reduce overtreatment of low-risk DCIS, the safety of active surveillance via yearly mammographic screening is being investigated in the LORD patient preference trial (LORD-PPT). Women participating in the LORD-PPT are given a choice between surgery and active surveillance. Sufficient knowledge about DCIS is important for patients to make an informed choice. We assessed patients’ DCIS knowledge and its associations with socio-demographic and clinical characteristics.
Methods Women participating in the LORD-PPT completed a questionnaire assessing socio- demographic characteristics, perceived breast cancer risk and DCIS knowledge after being informed about their diagnosis and treatment options. Knowledge was assessed using a 7-item knowledge checklist. Descriptive statistics and non-parametric tests were performed.
Results 66% of the 376 participants correctly answered ≤3 questions in the knowledge questionnaire. Most incorrect answers related to false assumptions regarding safety of active surveillance and prognostic risks associated with a DCIS diagnosis. Women with higher DCIS knowledge scores perceived their risk of developing breast cancer as being somewhat higher than women with lower knowledge scores (p=0.005). Women with higher DCIS knowledge scores more often chose conventional treatment whilst most women with lower knowledge scores chose active surveillance (p=0.009). Education level was not associated with knowledge.
Discussion Overall, DCIS knowledge was poor and was associated with patients’ risk perception and treatment choice.
Conclusions Effective shared decision-making about DCIS treatment seems to regularly be lacking. Our findings underscore that there is a need for a patient decision aid and communication guides for clinicians to facilitate informed treatment decision-making for DCIS.