9 General introduction - Part 1: Pediatric patient engagement - Part 2: Patient Reported Outcome Measures - Part 3: Patient Reported Experience Measures Figure 1. An overview of the different part of this thesis in relation to the patient-centered care model of NEJM Catalyst 1. Pediatric patient engagement An essential aspect of providing PCC, according to the NEJM model, is to involve patients in the decision-making in both clinical care and research (common elements 5 and 7) [2]. This involvement of patients, with the aim of improving health (care), is referred to as patient engagement [9,10]. Patient engagement is an umbrella concept and can be explained using the Multidimensional Framework for Patient Engagement in Health Care developed by Carman et. al. [11] (Figure 2). This framework shows that patients can be involved in all areas of health care, including clinical care, policy, and research. In addition, it states that patient engagement is a continuum and patients can influence decision-making to a different extend, ranging from consultation (e.g., patients are asked for their opinion, but have limited influence on decision-making) to active partnership (e.g., patients cooperate as equal partners). For which type of patient engagement is chosen depends on factors such as patients’ knowledge, the culture of the organization, time and budget constraints, and societal norms and values regarding patient engagement [11,12]. Patient engagement is beneficial for both patients and organizations. Studies have shown that patient engagement leads to decisions better matching patients’ wishes and needs, resulting in improved health outcomes, higher quality of care, and increased inclusion rates in research [13-15]. Furthermore, engaging patients enables them to be more responsible for their own health, which enhances selfconfidence and sense of control [12,16]. While the added value of patient engagement is increasingly recognized, clinicians and researchers struggle with the engagement of patients [17,18]. Clinicians doubt 1
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