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Table 3 Changes applied to the I-MBCT program and the research project based on the collaboration with the SWG

From: Patient involvement in the development of a psychosocial cancer rehabilitation intervention: evaluation of a shared working group with patients and researchers

Key changes in I-MBCT program Examples
 Wording of text has been adjusted to fit the patients’ preferences and for better understanding. - The text was shortened and organized in smaller sections to increase clarity.
- Psychological terms (e.g. “cognitive”) were explained.
 Examples mentioned in the program have been added and tailored to fit the preferences of the patient representatives. - Examples were made cancer specific targeting recognizable experiences related to cancer treatment and late-effects instead of being generally related to psychological distress.
 The visual structure of the program was modified. Colors and graphical explanations were added to facilitate understanding and focus. - Instead of having the program material in running text, the content was structured in information boxes, exercise boxes and example boxes with different identifiable layouts, e.g. blue for information, yellow for exercises and speech bubble for participant examples.
 Video examples were made with patient representatives from the SWG to supplement videos with expert statements. Video organization was based on patient representatives’ preferences. - Three patient representatives from the SWG participated in the videos talking about their own experiences with living with cancer late effects and previous participating in Mindfulness-Based Cognitive Therapy.
Key changes made to the research project
 Specific adjustments were made to the interview guide for the initial interviews with women treated for breast cancer and men treated for prostate cancer. Questions were re-worded for a better understanding - Clarification of the purpose with the interviews was emphasized.
- Language was modified to be less legalese.
- Examples of some of the themes (e.g. how cancer survivors should be addressed in Danish and existing online discussion forums) was printed on paper to show in the interviews.
 The recruitment procedure, targeting study participants from the hospital outpatient clinic, was justified. - Other possible recruitment procedures were discussed (e.g. online advertisement on social media and leaflet at the Oncology Department), but the original planned procedure was maintained because it was stated as preferable as it exudes seriousness to the treatment.
 Information material was reformulated and restructured after patient representatives asked questions about concepts they did not understand. - A clarification of what “Mindfulness-Based Cognitive Therapy” means was added (the term “cognitive” was not understood).
- The structure was changed into a different order presenting how the program could benefit the patients first and then research technical details later.
 Recruitment procedures in the hospital clinic were revised. The revision was based on the new perspective the patient representatives gave on when and how to invite patients to participate in the study, and how to go about the procedures in the hospital, bearing the patients’ perspectives in mind. - It became clear that the optimal time for providing a psychosocial intervention was after the primary treatment (chemotherapy, radiation therapy and surgery) was completed and when patients are released from the course of treatment and can feel “left alone with their thoughts”.
 Based on comments from the men treated for prostate cancer, it was clarified that sexual dysfunction is an underestimated issue that they experience is not raised among health professionals. - An additional question about sexual dysfunction was added to the questionnaire regarding late effects.