Dunja Dreesens

124 Main findings The first research question, and part of the second research question, was addressed by carrying out a scoping review (chapter two). A scoping review examines the extent and nature of research activity; it does not depict research findings in any detail but maps fields of study where it is difficult to visualize the range of material that could be available (93). The review looked at 20 national organisations that develop and disseminate knowledge tools. A knowledge tool is defined as a tool that distils, synthesizes and interprets the highest quality knowledge and research to serve knowledge translation and support (shared) decision-making. A tool type refers to a category, a kind of tool such as clinical practice guidelines (CPG) and patient decision aids (PDA). The clinical practice guideline Palliative care for children is considered a tool, not a tool type. When referring to a tool type such as clinical practice guidelines, it is in general and not to a specific guideline on a certain subject. The scoping review revealed numerous tool types. Even though only a limited set of national organisations that develop tools within the curative and palliative domain were included in the review, and thus disregarding locally, commercially and internationally developed tools, 126 tool types were found. Sixty-four of those were included in the review. Most of the tool types were ill defined or no definition was provided at all. The majority of these tool types were aimed primarily at healthcare professionals, a few at patients, and almost none (primarily) at policy advisors. A shared common terminology and mutual understanding of tool types in an ever increasing multidisciplinary and multi-level stakeholders’ involvement is deemed necessary for the development and use of these tool types. Preferably the definition of a tool type contained a description of the tool, its goal and its target user(s). This was one of the results of the RAND-modified Delphi-procedure (chapter three). The aim of the Delphi-procedure was first to reach nationwide consensus on the definitions of knowledge tool types. And two, to limit the number of tool types in the Netherlands. Thus, answering thesis research question two. The participants of the Delphi procedure were from various domains in health care such as curative and long term care, tool developers, scientists, practitioners, and government. These participants reached agreement on a set of nine tool types, which they considered important for knowledge translation and (shared) decision- making. Furthermore, they reached consensus on the definitions of five tool types within that set of nine tool types. These five tools were: clinical practice guideline, summary, flow chart, patient decision aid and protocol (of clinical practice guideline). As the Netherlands were not the only country dealing with an abundance of ill-defined knowledge tool types, the third research question was dealt with on an international level. Therefore, a group of international experts with different backgrounds developed – during an evidence-informed consensus meeting – a framework for patient-directed knowledge tool types (chapter four). The experts decided to start with patient-directed knowledge tool types instead of a broader set of tool types, as developing a framework for just patient-directed knowledge tool types would be difficult enough. Expanding to other tool types could be a next step. Patient-directed knowledge tools are directly aimed at patients and their next of kin, not at their Chapter 7