Involving all patients in decision-making. How to improve ‘option talk’ and risk communication in general practice for patients with limited health literacy?

Background The management of chronic disease in general practice such as cardiovascular disease (CVD) or diabetes requires a high level of active patient involvement since the patient is often confronted with decisions concerning diagnostic and treatment options, lifestyle and self-management. Particularly patients with limited health literacy are more likely to have a poor understanding of their chronic disease and unfavourable outcomes. Therefore, it is important for General Practitioners (GPs) to involve them into the decision process with clear and transparent information, typically in situations where different valid interventions are available, and where the best option is dependent on the context and values of the patient. One crucial step in the process of shared decision making (SDM) is providing trustworthy information about a set of options, the so-called ‘option talk’. ‘Option talk’ entails to not only inform patients on what options for intervention are available, be it on screening, diagnosis, treatment, or self-management, but it also refers to inform the patient on the accompanying pros - the benefits -and cons - the harms and treatment burden - of each option and their probabilities. This type of communication is referred to as ‘risk communication’ in scientific literature. What is the problem? Despite theoretical insights in preferred risk communication formats, the option talk and risk communication in daily clinical practice remains a major challenge for clinicians. This is even more true in consultations with people with limited health literacy. Patient decision aids (PtDAs) have shown to support ‘option talk’ and risk communication within SDM. The Netherlands is one of the leading countries in SDM. Over 250 Dutch PtDAs are currently available, some of which may be more tailored to patients with limited health literacy than others, e.g. due to effective co-creation with patients with limited health literacy (best practices). Aim and objectives For limited health literate patients with increased risk on chronic diseases, we seek to answer the following questions: 1. What is the current state of the art in key literature on how to communicate the meaning of options and accompanying pros/cons (risk communication) in option talk during consultations, and how to tailor PtDAs to the needs of these patients? 2. What is the current state of risk communication in Dutch PtDAs according to insights in the key literature, and what are lessons learned from innovative best practices in PtDA development, to improve option talk and risk communication? Methods Our research has a strong focus on involving key stakeholders. Representatives of the Netherlands Patient Federation, Pharos, and Dutch College of GPs have been involved from scratch, in designing this proposal. In this one-year study we will firstly perform a systematic literature review on the topic option talk and risk communication in the context of SDM in limited health literate patients and subsequently we will analyse existing Dutch PtDAs concerning their risk communication sections and its performance regarding the criteria that will be established based on the literature review. To discuss the applicability of the findings for tailoring risk communication and PtDAs to the needs of limited health literate patients in daily clinical practice, three homogeneous focus groups will be held. 1) With experts in the field of SDM and risk communication and/or health literacy; 2) with GPs and practice nurses regularly confronted with patients who have limited health literacy and 3) with patients with limited health literacy. The findings of the literature review and PtDA analysis will be translated to and illustrated by two patient cases (e.g. CVRM and diabetes, to be decided) to serve as an input for the focus group interviews. The focus group interviews will be analysed according to qualitative content analysis. This will help to clearly elucidate the gap between theory of option talk and risk communication in limited health literacy patients and application of those strategies in clinical practice. Deliverables: • Insights from the literature on strategies to support effective option talk and risk communication, accounting for limited health literacy, in the context of SDM on preference-sensitive healthcare decisions. • Insights from best practices in existing Dutch PtDAs with regard to adapting option talk and risk communication to limited health literacy. • Interpretation of both sources of insight, to illustrate possible promising strategies for improving option talk and risk communication in clinical practice and in PtDAs, validated in focus groups with professionals and patients. • Final set of recommendations for practice for the Dutch quality criteria on risk communication for patient-directed knowledge tools and for further research on option talk and risk communication in the consultation with limited health literate patients.