Search

SUMMARYCommunicating personalized, risk-based breast cancer screening information is challenging. In co-creation with women, information needs were assessed and information prototypes and visualizations were developed. Explaining risk-based screening with underlying risk factors should be done through unambiguous information with a cordial/personal tone, accompanied by visualizations. To meet women’s needs and experts’ views, layered information is recommended. KEYWORDS: Citizen participation, risk communication, personalized cancer screening, co-creationBACKGROUNDBreast Cancer (BC) screening will likely become more personalized, based on risk categories (i.e., risk stratification) (RIVM, 2022). This implies that complex information needs to be communicated, including multifaceted risk information (i.e. no breast abnormality found, risk category with probability information, and corresponding advice for follow-up screening interval/method). This risk information is difficult for women to understand (Fagerlin et al., 2007; Zikmund-Fisher, 2012), especially for those with lower health literacy (HL) levels. This study aimed to design informational materials, including (interactive) visualizations, of risk information in personalized BC screening through co-creation with women from the target group. METHODSThree co-creation sessions were conducted with women between 40-50 yrs not yet invited for BC screening (session 1 n=4, 2 low HL; session 2-3 n=6, 3 low HL) to gain insight into information needs and to co-design informational materials, including risk visualizations. During the sessions, women completed creative assignments (e.g., sensitizing booklet, process mapping of screening process, 5W1H method) and created/evaluated visualizations of risk information. Resulting prototypes were further evaluated by women between 54-62 yrs familiar with BC screening in two additional co-creation sessions (session 1 n=2, 1 low HL; session 2 n=2, 0 low HL). Experts in epidemiology and personalized screening evaluated prototype content on accuracy. Adapted prototypes were tested through think-aloud interviews in a new group of women (n=9, 40-74 yrs). The three-phase structure for generative data analysis was used for analysis (Visser et al., 2005). Notes, photos, created materials, and interviews were summarized, and main themes were identified. RESULTSWomen had a positive attitude towards personalized, risk-based BC screening. However, the concept of risk-based screening was not fully understood in the initial co-creation sessions. Women wrongly believed it would help them identify personally relevant and modifiable risk factors. But actually, personalization is at group level (i.e., risk category) and not on individual level, therefore feedback on individual risk factors is not possible. Besides, many risk factors cannot be influenced (e.g. age of first menstruation). Nonetheless, women indicated that they needed an elaboration on the implications of being assigned to a risk category. They said to initially only want information applying to their own risk category, but at the same time also need a comparison to the other categories. There were some inconsistencies between women’s and experts’ views. For example, the classification of risk categories did not match women’s perceptions (i.e., absolute numbers indicating high risk were not perceived as high risk). Experts stressed the importance of precise and nuanced information (e.g., a range to indicate absolute risks instead of one number) where women wanted unambiguous information (e.g., no range to indicate absolute risks but one number). Concerning information presentation, women appreciated comprehensible language with a cordial and personal tone, accompanied by visualizations. Prototypes tested during think-aloud interviews contained layered information to emphasize the personalized risk-based information first and later provide the context information about the risk-based BC screening program. These prototypes were generally well understood and evaluated, although some visualizations (e.g., the risk factors hormones and breast tissue and the flow-chart of the procedure for risk-based screening) need further improvement to improve understanding. DISCUSSIONThe positive attitude towards personalized, risk-based BC screening is in line with previous studies (Rainey et al., 2020). What our study adds are specific insights into information needs and the complexities involved in adequately understanding the complex message that women will receive. Both aspects prioritized by women (e.g., indicating global risk factors) and by experts (e.g., absolute risk categories with explanations) were addressed in the final prototypes created. Layered information seems needed, e.g., providing only the information of the specific risk category with additional information about the other categories for those interested. CONCLUSIONSInformational materials about personalized BC screening should emphasize the idea of risk stratification into categories instead of on a personal level, including general instead of personal risk factors. Layered information is recommended to meet both women’s needs and experts’ views. Developed materials, including the risk visualizations, were well understood and evaluated, although some visualizations need further improvement. ACKNOWLEDGEMENTSThe authors would like to thank the participants in the co-creation sessions and think-aloud interviews. We also thank the RIVM Centre for Population Screening (RIVM-CvB) and the Dutch Breast Cancer Association (BVN) for their advisory role in the study. Mirjam Fransen, Ellen Uiters, Mireille Broeders, Carla van Gils, Linda Rainey, Harry de Koning, Lidewij Henneman, and Yasmina Okan are thanked for their expert opinion. This study was supported by ZonMw (50-53125-98-163). REFERENCES Fagerlin, A., Zikmund-Fisher, B. J., & Ubel, P. A. (2007). "If I'm better than average, then I'm ok?": Comparative information influences beliefs about risk and benefits. Patient Education and Counseling, 69(1-3), 140-144. Doi: 10.1016/j.pec.2007.08.008 Rainey, L., van der Waal, D., & Broeders, M. J. M. (2020). Dutch women's intended participation in a risk-based breast cancer screening and prevention programme: a survey study identifying preferences, facilitators and barriers. BMC Cancer, 20(1), 965. Doi: 10.1186/s12885-020-07464-2RIVM. (2022). Bevolkingsonderzoek borstkanker - professionals: actuele ontwikkelingen. National Institute for Public Health and the Environment. Retrieved June 2022 from https://www.rivm.nl/bevolkingsonderzoek-borstkanker/professionals/actuele-ontwikkelingenVisser, F. S., Stappers, P. J., van der Lugt, R., & Sanders, E. B. N. (2005). Contextmapping: experiences from practice. CoDesign, 1(2), 119-149. Doi: 10.1080/15710880500135987 Zikmund-Fisher, B. J. (2012). The Right Tool Is What They Need, Not What We Have: A Taxonomy of Appropriate Levels of Precision in Patient Risk Communication. Medical Care Research and Review, 70(1_suppl), 37S-49S. Doi: 10.1177/1077558712458541

IntroductionPatient Decision Aids (PDAs) usually provide benefit/harm information about treatment options and value clarification methods(VCMs). Personalized risk information from prediction models is also increasingly integrated. We aimed to design this total package of decision-relevant information about adjuvant breast cancer treatment in co-creation with patients, and to present it in an understandable way.MethodsThree co-creation sessions with breast cancer patients (N=7-10; of whom N=5 low health literate). Participants completed creative assignments and evaluated prototypes of benefit/harm information and VCMs. Prototypes were further tested in a new group of patients (N=10) and professionals (N=10). Notes, homework assignments, photos and audio-recordings were summarized and main themes were identified. User test sessions were transcribed literally and analyzed using ATLAS.ti to assess key themes related to comprehension. ResultsImportant information needs identified were: (a) need for overview/structure of information directly after diagnosis; (b) need for transparent benefit/harm information for all adjuvant treatment options, including detailed side-effects/late effects information. As for VCMs, patients stressed the importance of a summary or conclusion. A classical bar graph seemed the most appropriate way of displaying personalized survival rates; the impact of most other formats was experienced as too distressful. The concept of ‘personalized information’ was not understood by multiple patients. DiscussionPatients’ need for numerical information about side-effects/late effects is in line with previous literature. This numerical information is not always easily available, complicating SDM. The need for conclusions in VCMs also corresponds to previous studies, but is still not included in many PDAs. Although we experimented with alternative visualizations of survival rates, patients seemed to be supported better with a classical bar graph. ConclusionThis co-creation study provided concrete perspectives to meet patient information needs through a PDA. Further quantitative studies are needed to establish comprehension of generated prototypes and the concept of ‘personalized information’.

IntroductionDecision-relevant numerical information about treatment options presented in Patient Decision Aids/a consultation, is important for Shared Decision Making (SDM). In two experiments risk communication formats to present probabilistic information to patients with varying levels of Health Literacy (HL), numeracy, and Graph Literacy (GL) were investigated using adjuvant therapy for breast cancer as a case example.MethodsTwo between-subjects experiments were conducted with hypothetical scenarios, among women aged 50-70 years. The first experiment (n = 219) investigated the effect of survival rate format (i.e., textual, bar graph, and icon array) on gist and verbatim comprehension. The second experiment (n = 282) investigated the effect of side-effect presentation format (i.e., text, numbers, visualization, description of the side-effects with numbers or a visualization) on gist comprehension and feeling informed.ResultsNo significant differences in the primary outcomes were found for the different survival rate presentation formats. Although gist and verbatim comprehension were influenced by HL, numeracy, and GL, no interaction effects with format were found. The effect of the presentation format of side-effects on participants’ comprehension and feeling informed are currently being analyzed. DiscussionContrary to previous literature, the format in which survival rates were presented did not affect any of the outcomes assessed, irrespective of the patients’ information processing skills. The number of treatment options, in this case, three, and the presented small difference in survival rates between these options might have influenced these results. Conclusion The survival rate presentation format did not affect patients’ responses to the numerical information presented

Background:Although formal treatments like antidepressants and psychotherapy may effectively reduce depression in nursing home residents, side effects and poor treatment adherence are common. To improve depression care, it is important to also learn from informal strategies already used successfully in daily practice, alongside or in absence of formal treatment. For example, although not prescribed as formal treatment, a care provider may seat a resident with depression at a table near the window. This may have antidepressant effects due to extra day light or pleasant views from the window.Objectives:To identify, categorize, and prioritize informal antidepressant strategies for residents already used in daily practice as reported by residents themselves, their relatives, and professional caregivers.Method:In the first Group Concept Mapping study, residents, relatives, and professional caregivers (N = 124) brainstormed on strategies to prevent or improve depression that may be performed by residents themselves. In the second study, the same participants (N = 110) reported on strategies others involved in residents’ lives could perform. In a second round of both studies, participants rated the expected effectiveness (N = 54, N = 51 respectively) and feasibility (N = 50 for both studies) of the strategies mentioned. In addition, strategies for both studies were sorted based on similarity in meaning by experts.Results:Six clusters appeared for actions to be undertaken by residents themselves, and five clusters for actions by others. The results showed that, for strategies by residents, the clusters ‘Being socially connected’ and ‘Participating in activities’, and for strategies by others, the cluster ‘Offering personal attention’ stand out the most in terms of high expected effectiveness. The cluster with strategies executed by residents that stood out as the most feasible was ‘Having a healthy living environment’. The most feasible clusters performed by others were ‘Offering personal attention’, ‘Using positive treatment/approach’, and ‘Using or adapting the physical environment’.Conclusion:By using an innovative bottom-up participatory approach, this research shed light on various clusters of useful informal antidepressant strategies for daily practice. To test effectiveness and implementation, research is needed on these antidepressant strategies and their regular use in care.

P15. Depression is an undertreated problem in nursing home (NH) residents with dementia (RwD), associated with increased mortality and low quality of life. Our previous research on a multidisciplinary depression care program suggested that NH staff might change their behaviour towards a RwD alongside or in place of an official treatment after a depression has been diagnosed. A carer can act deliberately (intentionally) or intuitively (spontaneously, e.g. a spontaneous hug to comfort a sad RwD). Research on such informal Deliberate and Intuitive Antidepressant Strategies (DIAS) is lacking. We conducted a Group Concept Mapping to reveal potential DIAS that professional carers might use alongside or in place of an official treatment. We used an online package to combine qualitative and quantitative approaches for generating and structuring content. Individual coding schemes were aggregated across professional carers (N=15) to objectively reveal thematic clusters. First, participants provided their ideas on DIAS. Second, they sorted the strategies and rated them on feasibility and importance to reduce depression in RwD. The hierarchical cluster analysis revealed seven categories: Planned Activities (e.g. painting, petting animals); Physical Contact (e.g. holding hands); Physical Involvement (e.g. involvement in housekeeping activities); Family Input and Reminiscence (e.g. using familiar items in the residents’ room); Acknowledging Emotions (e.g. listening to the RwD); Empathetic and Structuring Actions of Carers (e.g. providing structure); and Pleasant and Stable Environment (e.g. pleasant odours in the living area). Surprisingly, carers rated Planned Activities as the least important and least feasible, while the category Pleasant and Stable Environment was rated as most important and Acknowledging Emotions as most feasible to reduce depression in RwD. It is necessary to repeat this study with a larger group of participants to seek confirmation of the DIAS categories. Further research is needed to explore which strategies are the most effective for reducing depression in RwD. Furthermore, more insight is needed to understand whether our results reflect the attitudes of NH staff that may affect their deliberate or intuitive actions.