Information and communication priorities of patients and healthcare professionals in shared decision making regarding adjuvant systemic breast cancer treatment: A survey study.

PURPOSE: To assess information and communication priorities of patients and healthcare professionals in Shared Decision Making about adjuvant systemic treatment of primary breast cancer and identify key decision-relevant information accordingly. METHODS: Patients (N = 122) and professionals working with breast cancer patients (N = 118), of whom 38 were nurse practitioners and 32 nurses, were recruited using convenience sampling, and surveyed about information/communication aspects key to decision-making, using ranking assignments. We further posed a simple open question, questions about receiving population-based statistics versus personalized statistics concerning treatment outcomes, and their attitude and experience concerning Shared Decision Making. Data were analyzed using descriptive analysis and a qualitative analysis. RESULTS: Both patients and professionals prioritized information about treatment outcomes (i.e., survival, recurrence) as key decision-relevant information for patients. Patients prioritized information about relatively severe treatment side-effects and late effects (e.g., blood clot, stroke), whilst professionals prioritized information about effects that occur relatively often (e.g., hair loss, fatigue). Patients specifically wanted to know if the benefit of treatment is worth the negative impact. Both groups prioritized personalized statistics over population-based statistics. CONCLUSIONS: Some differences between patients and professionals were found in information and communication priorities, specifically related to the different side-effects. It seems worthwhile to precisely address these side-effects in Shared Decision Making concerning adjuvant systemic treatment. Furthermore, it seems important to deliberate together on the question if expected benefit of treatment is worth the potential negative impact for the individual patient.

Communicating the results of risk-based breast cancer screening through visualizations of risk: a participatory design approach.

BACKGROUND: Risk-based breast cancer (BC) screening raises new questions regarding information provision and risk communication. This study aimed to: 1) investigate women's beliefs and knowledge (i.e., mental models) regarding BC risk and (risk-based) BC screening in view of implications for information development; 2) develop novel informational materials to communicate the screening result in risk-based BC screening, including risk visualizations of both quantitative and qualitative information, from a Human-Centered Design perspective. METHODS: Phase 1: Interviews were conducted (n = 15, 40-50 years, 5 lower health literate) on women's beliefs about BC risk and (risk-based) BC screening. Phase 2: In three participatory design sessions, women (n = 4-6 across sessions, 40-50 years, 2-3 lower health literate) made assignments and created and evaluated visualizations of risk information central to the screening result. Prototypes were evaluated in two additional sessions (n = 2, 54-62 years, 0-1 lower health literate). Phase 3: Experts (n = 5) and women (n = 9, 40-74 years) evaluated the resulting materials. Two other experts were consulted throughout the development process to ensure that the content of the information materials was accurate. Interviews were transcribed literally and analysed using qualitative thematic analysis, focusing on implications for information development. Notes, assignments and materials from the participatory design sessions were summarized and main themes were identified. RESULTS: Women in both interviews and design sessions were positive about risk-based BC screening, especially because personal risk factors would be taken into account. However, they emphasized that the rationale of risk-based screening and classification into a risk category should be clearly stated and visualized, especially for higher- and lower-risk categories (which may cause anxiety or feelings of unfairness due to a lower screening frequency). Women wanted to know their personal risk, preferably visualized in an icon array, and wanted advice on risk reduction and breast self-examination. However, most risk factors were considered modifiable by women, and the risk factor breast density was not known, implying that information should emphasize that BC risk depends on multiple factors, including breast density. CONCLUSIONS: The information materials, including risk visualizations of both quantitative and qualitative information, developed from a Human-Centered Design perspective and a mental model approach, were positively evaluated by the target group.

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

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.

Message Frame-Tailoring in Digital Health Communication: Intervention Redesign and Usability Testing.

BACKGROUND: Message frame-tailoring based on the need for autonomy is a promising strategy to improve the effectiveness of digital health communication interventions. An example of a digital health communication intervention is Personal Advice in Stopping smoking (PAS), a web-based content-tailored smoking cessation program. PAS was effective in improving cessation success rates, but its effect sizes were small and disappeared after 6 months. Therefore, investigating whether message frame-tailoring based on the individual's need for autonomy might improve effect rates is worthwhile. However, to our knowledge, this has not been studied previously. OBJECTIVE: To investigate whether adding message frame-tailoring based on the need for autonomy increases the effectiveness of content-tailored interventions, the PAS program was redesigned to incorporate message frame-tailoring also. This paper described the process of redesigning the PAS program to include message frame-tailoring, providing smokers with autonomy-supportive or controlling message frames-depending on their individual need for autonomy. Therefore, we aimed to extend framing theory, tailoring theory, and self-determination theory. METHODS: Extension of the framing theory, tailoring theory, and self-determination theory by redesigning the PAS program to include message frame-tailoring was conducted in close collaboration with scientific and nonscientific smoking cessation experts (n=10), smokers (n=816), and communication science students (n=19). Various methods were used to redesign the PAS program to include message frame-tailoring with optimal usability: usability testing, think-aloud methodology, heuristic evaluations, and a web-based experiment. RESULTS: The most autonomy-supportive and controlling message frames were identified, the cutoff point for the need for autonomy to distinguish between people with high and those with low need for autonomy was determined, and the usability was optimized. CONCLUSIONS: This resulted in a redesigned digital health communication intervention that included message frame-tailoring and had optimal usability. A detailed description of the redesigning process of the PAS program is provided. TRIAL REGISTRATION: Netherlands Trial Register NL6512 (NRT6700); https://www.trialregister.nl/trial/6512.