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Growing up with hemophilia
Health related quality of life and psychosocial functioning
Limperg, P.F.
Publication date
2017
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Citation for published version (APA):
Limperg, P. F. (2017). Growing up with hemophilia: Health related quality of life and
psychosocial functioning.
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Gr
owing up with hemophilia:
health r
elated quality o
f life and psychosocial functioning
Perrine Limper
g
Growing up with hemophilia:
health related quality of life and
psychosocial functioning
Growing up with hemophilia:
health related quality of life and
psychosocial functioning
This work was supported by an unrestricted research grant by Pfizer Pharmaceuticals.
The printing of this thesis was financially supported by: AbbVie
Academic Medical Center Bayer
Biomedia CSL Behring Sobi
Stichting Artsen voor Kinderen Stichting Haemophilia
Pfizer bv
Cover: Lydia Limperg-Verhagen Lay-out: MyStro
Printed by: Gildeprint - Enschede ISBN/EAN: 978-94-6233-620-9
© 2017 Perrine Limperg, Amsterdam, the Netherlands
All rights reserved. No part of this thesis may be reproduced, stored in a retrieval system, or transmitted in any form or by any means without prior permission in writing from the author.
Growing up with hemophilia:
health related quality of life and psychosocial functioning
ACADEMISCH PROEFSCHRIFT
ter verkrijging van de graad van doctor
aan de Universiteit van Amsterdam
op gezag van de Rector Magnificus
prof. dr. ir. K.I.J. Maex
ten overstaan van een door het College voor Promoties ingestelde
commissie,
in het openbaar te verdedigen in de Agnietenkapel
op vrijdag 30 juni 2017, te 12:00 uur
door
Perrine Floor Limperg
geboren te ‘s-Gravenhage
Promotiecommissie:
Promotor: prof. dr. M.A. Grootenhuis Universiteit van Amsterdam Copromotores: dr. M. Peters Universiteit van Amsterdam dr. L. Haverman Universiteit van Amsterdam Overige leden: prof. dr. A.L. van Baar Universiteit Utrecht
dr. M.H. Cnossen Erasmus Universiteit Rotterdam prof. dr. C.J. Fijnvandraat Universiteit van Amsterdam prof. dr. J.B. van Goudoever Universiteit van Amsterdam prof. dr. S. Middeldorp Universiteit van Amsterdam prof. dr. M.A.G. Sprangers Universiteit van Amsterdam
Table of contents
Chapter 1 General introduction 9
Part I: Development and evaluation of instruments Chapter 2 Paediatric health-related quality of life: what is it and why
should we measure it?
Archives of Disease in Childhood (2016) [epub ahead of print] 33
Chapter 3 Health-related quality of life questionnaires in individuals with haemophilia: a systematic review of their
measurement properties
Haemophilia (2017), in press 55
Chapter 4 Reliability, validity and evaluation of the Haemophilia Coping and Perception Test
Haemophilia (2015), 21 (3), e243-246 85
Chapter 5 Health related quality of life in Dutch young adults: psychometric properties of the PedsQL generic core scales young adult version
Health and Quality of Life Outcomes (2014), 12(9) 97
Part II: HRQOL and psychosocial outcomes
Chapter 6 Generic and disease-specific health related quality of life in children and adolescents with bleeding disorders
In preparation 119
Chapter 7 Themes in daily life of adolescents and young adults with congenital bleeding disorders: a qualitative study
Haemophilia (2016), 22(4), e330-333 141
Chapter 8 Health related quality of life, developmental milestones and self-esteem in young adults with bleeding disorders
Submitted 151
Chapter 9 Psychosocial functioning of mothers of boys with haemophilia
Part III: Psychosocial care
Chapter 10 Psychosocial care for children with haemophilia and their parents in the Netherlands
Haemophilia (2017), in press 185
Chapter 11 Summary and general discussion
Appendices Nederlandse samenvatting 233
List of publications and submitted manuscripts 242
Financial support 247
Authors’ contribution per chapter 247
Authors and affiliations 252
PhD Portfolio 257
Dankwoord 261
