Cocreation with Dutch patients of decision‐relevant information to support shared decision‐making about adjuvant treatment in breast cancer care

• Published in: Health expectations : an international journal of public participation in health care and health policy Vol. 25; no. 4; pp. 1664 - 1677
• Main Authors: van Strien‐Knippenberg, Inge S., Boshuizen, Marieke C. S., Determann, Domino, Boer, Jasmijn H., Damman, Olga C.
• Format: Journal Article
• Language: English
• Published: England John Wiley & Sons, Inc 01.08.2022; John Wiley and Sons Inc; Wiley
• Subjects: Adjuvant therapy; Breast cancer; Breast Neoplasms - diagnosis; Breast Neoplasms - therapy; Cancer therapies; Clinical decision making; cocreation; Collaboration; Communication; Customization; Data collection; Decision Making; Decision Making, Shared; Decision Support Techniques; Estimates; Female; Health care; Health education; Health literacy; Health Personnel; Homework; Human subjects; Humans; Information needs; Information processing; Medical diagnosis; Medical research; Original; Patients; personalized information; Prediction models; Preferences; Prototypes; Quantitative research; Questionnaires; Research Design; risk communication; shared decision‐making; Side effects; Survival; Netherlands; personalized information; breast cancer; health literacy; risk communication; shared decision-making; cocreation
• ISSN: 1369-6513; 1369-7625; 1369-7625
• DOI: 10.1111/hex.13510

Background To support patients in shared decision‐making about treatment options, patient decision aids (PtDAs) usually provide benefit/harm information and value clarification methods (VCMs). Recently, personalized risk information from prediction models is also being integrated into PtDAs. This study aimed to design decision‐relevant information (i.e., personalized survival rates, harm information and VCMs) about adjuvant breast cancer treatment in cocreation with patients, in a way that suits their needs and is easily understandable. Methods Three cocreation sessions with breast cancer patients (N = 7–10; of whom N = 5 low health literate) were performed. Participants completed creative assignments and evaluated prototypes of benefit/harm information and VCMs. Prototypes were further explored through user testing with patients (N = 10) and healthcare providers (N = 10). The researchers interpreted the collected data, for example, creative and homework assignments, and participants' presentations, to identify key themes. User tests were transcribed and analysed using ATLAS.ti to assess the understanding of the prototypes. Results Important information needs were: (a) need for overview/structure of information directly after diagnosis and; (b) need for transparent benefit/harm information for all treatment options, including detailed harm information. Regarding VCMs, patients stressed the importance of a summary/conclusion. A bar graph seemed the most appropriate way of displaying personalized survival rates; the impact of most other formats was perceived as too distressful. The concept of ‘personalization’ was not understood by multiple patients. Conclusions A PtDA about adjuvant breast cancer treatment should provide patients with an overview of the steps and treatment options, with layers for detailed information. Transparent information about the likelihood of benefits and harm should be provided. Given the current lack of information on the likelihood of side effects/late effects, efforts should be made to collect and share these data with patients. Further quantitative studies are needed to validate the results and to investigate how the concept of ‘personalization’ can be communicated. Patient or Public Contribution Ten breast cancer patients participated in three cocreation sessions to develop decision‐relevant information. Subsequent user testing included 10 patients. The Dutch Breast Cancer Association (BVN) was involved as an advisor in the general study design.