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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]