Dunja Dreesens

72 Protocol Excluded from list Viewpoint Excluded from list From the preliminarily included tools, we deduced and described the possible purpose(s) of the tools. The purpose to inform patients was combined with ‘to educate patients’, because the emphasis was to make patients knowledgeable. Another reason to extend the purpose was that informing and educating are often used interchangeably. We made a distinction between the purpose supporting decision-making, and that of engaging in shared decision-making. Even though tools can support decision-making by patient and professional, this does not necessarily mean that the tool also promotes shared decision-making. In the end, the listed possible purposes were aggregated into four purposes (see Table 3): - Inform or educate; - Provide recommendation(s); - Support decision-making; - Engage in shared decision-making. When discussing possible purposes, alleviating fear(s), and decreasing decisional conflict were mentioned as well. The participants concluded they were outcomes, and were therefore not listed as a purpose. Communication was not included as a purpose as well. To engage patients, or exchange knowledge/information with a patient, as a healthcare professional, you need to communicate (verbally and non-verbally) with the patient. It is an overarching means, not a purpose in itself. The next step was to identify core elements of the included patient-directed knowledge tool types. The participants compared the tool types, identified recurring elements within tool types and between tools. Furthermore, based on existing frameworks and taxonomies they determined which elements should be included in a tool type (prototypical), even though existing examples of those tool types may not include these elements. Mentioned elements were for example, (link to) evidence, background on condition, care or treatment options/ alternatives, burden (and evidence thereof), relative importance of outcomes as different patients may weigh importance of outcomes differently (196). Also, possible effects of the tools, such as improving the knowledge of the patient, improving patient’s expectations of the treatment, impact on their health and quality of life, improving patient-provider communication, and changes in decision-making behaviour) were discussed as possible purposes. Whilst discussing the elements, explicit mentioning of harms and benefits of treatment/care in the tools was stressed by the participants. Harms were especially emphasised as these are often not mentioned or mentioned less often than benefits (69, 197, 198). At the end, the core elements were put into preliminary categories. When discussing the framework, the purposes, and core elements of the tool types, several issues surfaced. First, at the beginning of the meeting, one participant stated that the patient-directed knowledge tools are preferably based on trustworthy clinical practice guidelines. However, there appears to be a pivotal point between PDAs and CPGs: the element ‘recommendation’. A CPG centres on recommendations, meaning that the healthcare Chapter 4