Quality of DCIS information on the internet: a content analysis

PURPOSE: Women with ductal carcinoma in situ (DCIS) experience lingering confusion and anxiety, and may use the Internet for supplemental information. This study assessed the content and quality of DCIS information on the Internet. METHODS: We searched Google for English-language, publicly available DCIS information tools published from 2010 to current by non-profit organizations. We summarized tool characteristics, DCIS labels, and information important to women with DCIS corresponding to domains of a patient-centred care (PCC) framework. Tool quality was appraised with the DISCERN instrument. RESULTS: Of 39 tools included, most were plain language summaries published since 2016. Tools employed a median of 2.0 labels (range 1.0 to 5.0) for DCIS, most frequently non-invasive breast cancer (29, 74.4%), abnormal cells (14, 35.9%), pre-cancer (14, 35.9%), and early form of breast cancer (13, 33.3%). Tools addressed a median of 4.0 (range 2.0 to 5.0) PCC domains. Few tools contained content in the domains of fostering the relationship (30.8%), addressing emotions (41.0%), or follow-up (41.0%); 74.4% noted the risk of progression or recurrence but provided vague details. Tools were assessed as high (25.6%), moderate (48.7%), and low (25.6%) quality. CONCLUSIONS: Few DCIS information tools available to women on the Internet meet quality criteria for consumer health information or address concerns of importance to women with DCIS. By identifying a range of poorly defined terms used to label DCIS, and specific content domains that were lacking, this study identified how existing tools could be improved, and identified higher-quality tools that clinicians can use when discussing DCIS with patients. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s10549-019-05315-8) contains supplementary material, which is available to authorized users.