271 Discussion PROM core set for children (consisting of ten patient-reported outcomes relevant for all conditions), if necessary supplemented with disease-specific PROMs. This message is supported by the KLIK expert team and health care teams are being informed about the importance of generic measurement. The PROMIS measures are available to use in the KLIK PROM portal and research is being conducted to reduce the above mentioned barriers. Part 3: Patient Reported Experience Measures Chapter 8 provided an overview of the available pediatric PREMs and their use in clinical care. This systematic review demonstrated the adoption of PREMs in developed countries worldwide, aligning with the growing recognition of the importance of delivering PCC (41). Just like PROMs, PREMs were used in different health care settings targeting different purposes. In accordance with the literature, PREMs were most often used to evaluate factors that affected overall patient experience or assess experiences after an intervention with the ultimate goal of improving the quality of care (42, 43). In contrast to PROMs , where often digital administration tools are used (44), the majority of PREMs was administered via paper-pencil. Possible explanations for this administering mode can be found in the purpose and manner in which PREMs are processed. Where PROMs are completed before the outpatient consultation and discussed by the clinician at an individual level (44-46), PREMs are completed afterwards and are usually processed anonymously at group level for quality of care purposes. Noteworthy, PREMs are often confused with PROMs (assess patient’s health status, symptoms or well-being (25, 47, 48)) and satisfaction questionnaires (assess whether patient’s expectations about the received care were met (49)), but these measurement tools have different purposes that focus on different aspects of PCC (50, 51). Especially, the distinction between PREMs and satisfaction questionnaires is often overlooked, while satisfaction questionnaires involve a degree of subjectivity that is not seen in PREMs (52, 53). The interchangeability of concepts, around both pediatric engagement and PREMs, highlights the novelty of the research field of PCC and emphasizes the need for clarification of concepts (42). Currently, there is limited use of PREMs in the KLIK PROM portal, despite the availabilities. Within the KLIK PROM portal it is possible to administer PREMs after the outpatient consultation and to keep the answers confidential on an individual level. At this moment, PREMs are only used in the KLIK PROM portal for quality 9
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