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] |