75 Development of a patient engagement tool; All Voices Count Introduction Nowadays, engaging patients in health care is central to improving health outcomes that matter to them [1,2]. In health care, the concept of patient engagement applies to involving patients in decisions about their daily clinical care while addressing patients’ wishes and needs [1-6]. In day-to-day care, this means that patients are informed about the choice in treatment options to make decisions that are aligned with patients’ preferences [3,4]. In addition, efforts are increasingly being made to engage patients at a broader level of health care, including the level of the hospital organization, research and policy [4,6,7]. The extent to which patients influence the decision-making processes varies from consultation to active partnership – and everything in between [4,8]. For example, studies showed the involvement of adolescent patients in designing a youth-friendly ward and identifying their preferences regarding a study design or measurement of outcomes [9-12]. In whatever shape, patient engagement benefits both patients and organizations: It not only improves the quality of care but also improves patient experience and self-confidence, resulting in better health outcomes and higher inclusion rates in research [2,3,7,13]. Although the benefits of patient engagement are beyond dispute, clinicians and researchers still struggle with engaging patients in health care and research [14,15]. Mentioned reasons are that clinicians doubt whether patients are knowledgeable [16], involving patients is time consuming [16,17] and scheduling meetings with groups of patients is difficult [18]. Involving paediatric patients seems to be especially challenging [19,20], as the competence of children to participate is even more questioned [21-23]. Also, the involvement of parents makes the process of engaging complex because of the paternalist approach to care [13,21,22]. Finally, clinicians have little experience in how to involve children in matters pertaining health care [22]. Boenink et al. [24] developed a tool to engage adults in translational research, The Voice of Patients. With this card game, patients can reflect on various topics regarding biomedical research. The uptake of the tool was positive, exceeding expectations from both patients and researchers [24]. However, an engagement tool for children and adolescents is missing, but would be valuable to facilitate engaging paediatric patients. Thus, to fill in this gap, the aim of this study is to develop a patient engagement game for adolescents with a chronic condition that can be used by clinicians and researchers to incorporate what matters to paediatric patients 3
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