14 Chapter 1 the measurement is more reliable in comparison to legacy instruments resulting in a reduced burden for patients [62-64]. 3. Patient Reported Experience Measures According to NEJM Catalyst, delivering PCC is only possible if care is in line with patient-centered goals and provided at the right time and place (common element 1 and 2) [2]. Therefore, it is necessary to gain patients’ feedback about the received care and the extent to which care is experienced as patient-centered. Patient Reported Experience Measures (PREMs) are questionnaires asking patients about their experience with the care received, and are commonly used to gain insight into the quality of care [55,65,66]. PREMs thus offer patients the opportunity to provide information, with the aim to improve care [67]. Contrary to PROMs, PREMs do not measure outcomes of care, but assess the impact of process of care such as communication between clinician and patient, information sharing, and involvement of patients in decision-making. PREMs and satisfaction questionnaires are often used interchangeably, although there are important differences between these instruments [65,66]. PREMs assess whether something that should happen in the health care setting actually happened or how often it happened (i.e., objective experiences), while satisfaction questionnaires assess whether the patient’s expectation about the care received were met (i.e., subjective views). PREMs are increasingly used to pursue PCC. However, guidelines regarding the use of PREMs are lacking, resulting in a wide variety of PREMs and PREM use in pediatrics. Aim and outline of this thesis The ultimate goal of this thesis is to enhance pediatric PCC in clinical care and research. Therefore, this thesis focuses on the development of tools and scientific approaches to provide PCC in pediatric care. This thesis is divided into three parts that discuss different parts of PCC. Part 1: Pediatric patient engagement Pediatric patient engagement is developing in recent years, and pediatric patients are more often involved in health care (projects). However, clinicians and researchers still struggle with the engagement of pediatric patients [17,18]. To gain insight into the extend of pediatric patients engagement and the methods used, Chapter 2 provides a comprehensive overview of the literature about pediatric patient
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