CONTENTS Chapter 1 General introduction 7 Part I Measuring patient-reported outcomes Chapter 2 Patient-reported outcomes in autosomal inherited bleeding disorders: A systematic literature review 23 Chapter 3 Patient-relevant health outcomes for von Willebrand disease, platelet function disorders and rare bleeding disorders: A Delphi study 67 Chapter 4 Harmonizing patient-reported outcome measurements in inherited bleeding disorders with PROMIS 111 Chapter 5 Psychometrics of patient-reported outcomes measurement information system in von Willebrand disease, inherited platelet function disorders, and rare bleeding disorders 123 Part II Patient experiences with patient-reported outcomes Chapter 6 Patient experiences with value-based healthcare interventions at the HIV outpatient clinic of the Erasmus Medical Center 173 Part III Variation in care provision Chapter 7 Hemophilia care in the Netherlands: Identification and visualization of the care pathway for young children with hemophilia 199 Chapter 8 General discussion 221 Addendum Summary (English) 240 Samenvatting (Dutch) 246 List of publications 252 PhD portfolio 254 About the author 260 Dankwoord 262
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