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

Abstract 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 ca... Mehr ...

Verfasser: Inge S. van Strien‐Knippenberg
Marieke C. S. Boshuizen
Domino Determann
Jasmijn H. deBoer
Olga C. Damman
Dokumenttyp: Artikel
Erscheinungsdatum: 2022
Reihe/Periodikum: Health Expectations, Vol 25, Iss 4, Pp 1664-1677 (2022)
Verlag/Hrsg.: Wiley
Schlagwörter: breast cancer / cocreation / health literacy / personalized information / risk communication / shared decision‐making / Medicine (General) / R5-920 / Public aspects of medicine / RA1-1270
Sprache: Englisch
Permalink: https://search.fid-benelux.de/Record/base-27021292
Datenquelle: BASE; Originalkatalog
Powered By: BASE
Link(s) : https://doi.org/10.1111/hex.13510

Abstract 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 ...