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Table 1 Results of focus groups, expert reviews and revision process

From: Implementation of shared decision-making in oncology: development and pilot study of a nurse-led decision-coaching programme for women with ductal carcinoma in situ

Commentary of focus group participants (FG) and expert reviews (ER) Revision
FG: Overwhelming amount of information Text reduction; additional information is given as online resource linked with QR-codes for interested readers
FG: Request for information about lifestyle interventions to influence the course of the disease Chapter with the requested information was added
ER: Information about overdiagnosis and overtreatment might be an information overload Information was retained since it is relevant for treatment decisions
ER: Inclusion of the Van-Nuys-Prognostic Index [67] was recommended Suggestion was rejected: Index has not been validated prospectively by now [68]; applies only to recurrence risk after treatment. Instead, we listed factors associated with a higher recurrence risk (grading, size of lesion etc.).
Information quality
ER: Radiation procedures changed over time in dose and application so that the external validity of study results could be low Common problem in oncology research; the best available evidence is presented; limitation of generation
ER: Data on re-operation rates after mastectomy were quite heterogeneous. Experts recommended removing these data Data have been removed and a hint was replaced that valid data are not available
FG: Misunderstandings of figures and text passages Figures have been rearranged and the text passages were revised
FG: Challenging information: dissent between positive results and poor study validity Contradiction could not be solved: If required, the dissent can be explained by the decision coaches during the coaching
FG: Redundant information in text and tables was annoying for women with higher education Some women favoured the written presentation of risks, some preferred the tables. Therefore, redundancy was kept.
FG: Breast cancer survivors valued the photos after breast cancer surgery as realistic but not aesthetic Photos originated from the documentation of the treatment process in medical records; photos are available on demand as additional online resource
ER: Option watchful waiting polarizes:
  - Patient representatives pointed out its importance
  - Ebm-experts disbelieved that this could be a real option due to the missing evidence and associated uncertainties
The option was retained
ER: The term ductal ‘carcinoma’ in situ may cause anxiety We replaced ‘ductal carcinoma’ by the abbreviation DCIS. DCIS was not classified as a pre-stage of invasive breast cancer due to the unknown natural course [69, 70]