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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
Length/completeness
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
Comprehensibility
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.
Acceptability
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]