Table of contents Chapter 1 General introduction 6 Part 1: Pediatric patient engagement Chapter 2 Pediatric patient engagement in clinical care, research and intervention development: a scoping review 22 Chapter 3 Including the voice of paediatric patients: Cocreation of an engagement game 72 Part 2: Patient Reported Outcome Measures Chapter 4 Clinicians’ perspective on the implemented KLIK PROM portal in clinical practice 94 Chapter 5 Patients’ and parents’ perspective on the implementation of Patient Reported Outcome Measures in pediatric clinical practice using the KLIK PROM portal 122 Chapter 6 Implementation of the KLIK PROM portal using the Consolidated Framework for Implementation Research (CFIR) retrospectively 150 Chapter 7 Psychometrics of the patient-reported outcomes measurement information system measures in hemophilia; the applicability of the pediatric item banks 176 Part 3: Patient Reported Experience Measures Chapter 8 Use of Patient-Reported Experience Measures in pediatric care: a systematic review 200 Chapter 9 Discussion 254 Addendum Summary 284 Summary in Dutch – Nederlandse samenvatting 288 List of publications 294 List of contributing authors 297 Authors’ contributions per chapter 301 Financial support 303 PhD portfolio 304 Curriculum Vitae 308 Acknowledgements – dankwoord 309
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