Objective: Patient-directed knowledge tools are designed to engage patients in dialogue or deliberation, to support patient decision-making or self-care of chronic conditions. However, an abundance... Show moreObjective: Patient-directed knowledge tools are designed to engage patients in dialogue or deliberation, to support patient decision-making or self-care of chronic conditions. However, an abundance of these exists. The tools themselves and their purposes are not always clearly defined; creating challenges for developers and users (professionals, patients). The study's aim was to develop a conceptual framework of patient-directed knowledge tool types.Methods: A face-to-face evidence-informed consensus meeting with 15 international experts. After the meeting, the framework went through two rounds of feedback before informal consensus was reached.Results: A conceptual framework containing five patient-directed knowledge tool types was developed. The first part of the framework describes the tools' purposes and the second focuses on the tools' core elements.Conclusion: The framework provides clarity on which types of patient-directed tools exist, the purposes they serve, and which core elements they prototypically include. It is a working framework and will require further refinement as the area develops, alongside validation with a broader group of stakeholders.Practice implications: The framework assists developers and users to know which type a tool belongs, its purpose and core elements, helping them to develop and use the right tool for the right job. (C) 2019 Elsevier B.V. All rights reserved. Show less
Objective: To learn how to configure a patient communication aid (PCA) to facilitate shared decision-making (SDM) about treatment for advanced cancer.Methods: The PCA consists of education about... Show moreObjective: To learn how to configure a patient communication aid (PCA) to facilitate shared decision-making (SDM) about treatment for advanced cancer.Methods: The PCA consists of education about SDM, a question prompt list, and values clarification methods. Study 1. A first veersion was presented to 13 patients, 8 relatives and 14 bereaved relatives in interviews. Study 2. A second version was used by 18 patients in a pilot study. Patients and oncologists were interviewed, patients were surveyed, and consultations were audio-recorded.Results: Respondents reported that the aid facilitated patient control over information, raised choice awareness and promoted elaboration. Risks were identified, most importantly that the aid might upset patients. Also, some respondents reported that the PCA did not, or would not support decision making because they felt sufficiently competent, did not perceive a role for themselves, or did not perceive that the decision required elaboration.Conclusions: Opinions on the usefulness of the PCA varied. It was challenging to raise awareness about the presence of a choice, and to find a balance between comprehensive information and sensitivity.Practice implications: A future study should demonstrate whether the PCA can improve SDM, and whether this effect is stronger when oncologists receive training. (C) 2018 Elsevier B.V. All rights reserved. Show less
Patients’ understanding of how to use their therapy is a key determinant of good medication adherence. Low-literate medication users, who have difficulty reading, are at higher risk to... Show morePatients’ understanding of how to use their therapy is a key determinant of good medication adherence. Low-literate medication users, who have difficulty reading, are at higher risk to misunderstand information about their therapy and to experience negative health outcomes compared to patients with higher reading levels.This thesis describes the development of visual aids, pictograms, to support written drug information for low-literate medication users, with repeated consultative/participative involvement of the target group.The pre-design phase showed that low-literate people experience drug leaflets as discouraging to use and that pictograms can make information look more appealing and easier to find, read and understand.This phase was followed by an iterative design, evaluation and redesign process using mixed-methods. Finally, the pictograms were tested in the context of easy-to-read drug leaflets with antihypertensive medication users.In addition to the resulting grammatical system of pharmaceutical pictograms, the thesis presents recommendations for the design of informative images for low-literate patients as well as an evaluation of end-user involvement in the design of pharmaceutical pictograms.The study shows that it is essential to provide low-literate medication users with suitable, printed drug information and that the use of pictograms can empower this target group. Show less
Rheumatoid arthritis (RA) is a chronic disease requiring immediate pharmacological treatment. Chronically-ill patients may also benefit from self-management support and multidisciplinary care. This... Show moreRheumatoid arthritis (RA) is a chronic disease requiring immediate pharmacological treatment. Chronically-ill patients may also benefit from self-management support and multidisciplinary care. This thesis focused on 1) self-management support, and 2) productive interactions between the informed patient and the multidisciplinary care team as applied to the management of RA, with a focus on the patient perspective. With respect to self-management support, this thesis showed that there is a considerable information need among RA patients. An instrument to systematically assess information need (the Dutch ENAT) was translated and tested among RA patients. A website to inform patients about practical aspects of regional health care services had a positive effect on the information need of RA patients. Concerning multidisciplinary team care, this thesis suggests that despite advances in (non-)pharmacological care, subgroups of RA patients remain in need of multidisciplinary team care. The WHODAS II was found to be a valid and responsive instrument to evaluate the effectiveness of team care. However, the ICF Core Sets for RA appeared to be the most useful instrument to make a comprehensive assessment of the RA patient and to optimize goal setting and goal evaluation, as they best covered the aspects considered important by patients. Show less
