Shannon van Hoorn

Chapter 1 General introduction	7
Part I Measuring patient-reported outcomes	20
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	171
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	196
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	239
Summary (English)	240
Samenvatting (Dutch)	246
List of publications	252
PhD portfolio	254
About the author	260
Dankwoord	262

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