On 2016 Jan 19, BSH Cancer Screening, Help-Seeking and Prevention Journal Club commented:

The HBRC discussed this paper during the journal club held on January 12th 2016. We read the paper with great interest as the topic is particularly relevant for our group. We also considered it as a very timely and useful contribution to the discussions taking place in the wider screening community on issues of overdiagnosis/overtreatment and informed decision making.

The study examined how using different terms for describing ductal carcinoma in situ (DCIS) might affect women’s concern and treatment preferences. This is important because, as stated by the authors, about 20% of screening detected breast cancers are DCIS. Overdiagnosis and overtreatment can be an important problem for DCIS and it has been suggested that a possible approach to reduce this problem may be to change the name and use alternative terms avoiding the word cancer and carcinoma.

The group agreed that the authors should be acknowledged for their study which used a randomised design within a broader community survey. This allowed to include women with different socio-demographic characteristics and different prior screening experiences. However, as already pointed out by the authors, the group felt that the women’s responses to hypothetical scenarios might not necessarily reflect real life situations. For example, in a real life clinical context, after receiving a DCIS diagnosis, treatment options would be discussed with a clinician and the information and advice provided by the doctor would be important for helping the patient to make the best treatment decision. This was obviously not possible within the study context. Moreover, as also pointed out by the authors, the group felt that patients’ answers might have been strongly influenced by the statement ‘if research shows that watchful waiting is a safe and effective option’. This does not reflect the information that patients would get in a real clinical setting, considering that evidence is still lacking. Nevertheless, we agreed that it is extremely interesting to examine the effects of different terms on understanding, psychological outcomes and treatment preferences. The group would encourage more work in this area.

We also discussed advantages and disadvantages of the cross-over design. It was highlighted that once a person has been presented with a specific scenario which includes the word cancer, it is unlikely that responses to scenarios/terms presented subsequently might not be influenced by the initial exposure. Therefore it was felt that the between group comparison was more relevant than the before-after comparison within participants.

The group would have liked to have more information on how the terms used in the two study arms were selected and whether other alternative terms were excluded based on pilot testing. Future studies could explore different terminology. Furthermore, the relatively small sample size limited the possibility of examining whether results might be different for people with previous screening experience or belonging to specific age-groups. Larger studies and also research exploring the effect of different terminology in the context of other diseases (e.g. pulmonary lesions following imaging, diabetes/pre-diabetes) on understanding, patient concerns and treatment decisions would be welcome.

In conclusion, the HBRC group read the article with great interest and would encourage further studies in this area.

Conflicts of interest: We report no conflict of interests and note that the comments produced by the group are collective and not the opinion of any one individual.

On 2016 Jan 19, BSH Cancer Screening, Help-Seeking and Prevention Journal Club commented:

The HBRC discussed this paper during the journal club held on January 12th 2016. We read the paper with great interest as the topic is particularly relevant for our group. We also considered it as a very timely and useful contribution to the discussions taking place in the wider screening community on issues of overdiagnosis/overtreatment and informed decision making.

The study examined how using different terms for describing ductal carcinoma in situ (DCIS) might affect women’s concern and treatment preferences. This is important because, as stated by the authors, about 20% of screening detected breast cancers are DCIS. Overdiagnosis and overtreatment can be an important problem for DCIS and it has been suggested that a possible approach to reduce this problem may be to change the name and use alternative terms avoiding the word cancer and carcinoma.

The group agreed that the authors should be acknowledged for their study which used a randomised design within a broader community survey. This allowed to include women with different socio-demographic characteristics and different prior screening experiences. However, as already pointed out by the authors, the group felt that the women’s responses to hypothetical scenarios might not necessarily reflect real life situations. For example, in a real life clinical context, after receiving a DCIS diagnosis, treatment options would be discussed with a clinician and the information and advice provided by the doctor would be important for helping the patient to make the best treatment decision. This was obviously not possible within the study context. Moreover, as also pointed out by the authors, the group felt that patients’ answers might have been strongly influenced by the statement ‘if research shows that watchful waiting is a safe and effective option’. This does not reflect the information that patients would get in a real clinical setting, considering that evidence is still lacking. Nevertheless, we agreed that it is extremely interesting to examine the effects of different terms on understanding, psychological outcomes and treatment preferences. The group would encourage more work in this area.

We also discussed advantages and disadvantages of the cross-over design. It was highlighted that once a person has been presented with a specific scenario which includes the word cancer, it is unlikely that responses to scenarios/terms presented subsequently might not be influenced by the initial exposure. Therefore it was felt that the between group comparison was more relevant than the before-after comparison within participants.

The group would have liked to have more information on how the terms used in the two study arms were selected and whether other alternative terms were excluded based on pilot testing. Future studies could explore different terminology. Furthermore, the relatively small sample size limited the possibility of examining whether results might be different for people with previous screening experience or belonging to specific age-groups. Larger studies and also research exploring the effect of different terminology in the context of other diseases (e.g. pulmonary lesions following imaging, diabetes/pre-diabetes) on understanding, patient concerns and treatment decisions would be welcome.

In conclusion, the HBRC group read the article with great interest and would encourage further studies in this area.

Conflicts of interest: We report no conflict of interests and note that the comments produced by the group are collective and not the opinion of any one individual.