UvA-DARE (Digital Academic Repository) Anorectal malformations and hirschsprung disease Witvliet, M.J. Link to publication Citation for published version (APA): Witvliet, M. J. (2017). Anorectal malformations and hirschsprung disease: Functional and psychosocial challenges General rights It is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s) and/or copyright holder(s), other than for strictly personal, individual use, unless the work is under an open content license (like Creative Commons). Disclaimer/Complaints regulations If you believe that digital publication of certain material infringes any of your rights or (privacy) interests, please let the Library know, stating your reasons. In case of a legitimate complaint, the Library will make the material inaccessible and/or remove it from the website. Please Ask the Library: http://uba.uva.nl/en/contact, or a letter to: Library of the University of Amsterdam, Secretariat, Singel 425, 1012 WP Amsterdam, The Netherlands. You will be contacted as soon as possible. UvA-DARE is a service provided by the library of the University of Amsterdam (http://dare.uva.nl) Download date: 11 Jan 2018
Anorectal Malformations and Hirschsprung Disease Marieke J Witvliet Anorectal Malformations and Hirschsprung Disease Marieke J Witvliet
Anorectal Malformations and Hirschsprung Disease Marieke Jolanda Witvliet
Anorectal Malformations and Hirschsprung Disease: Thesis, University of Amsterdam, The Netherlands Paranimfen: Janneke Witvliet & Eefje Witvliet ISBN 978-94-6233-730-5 Front cover design: Edgar Geersinga Printing and lay-out: Gildeprint, Enschede M.J. Witvliet, Amsterdam, The Netherlands, 2017 No part of this thesis may be reproduced, stored or transmitted, in any form or by any means, without prior permission of the author. The printing of this thesis was financially supported by: Zambon Nederland, Chipsoft B.V., Divisie Heelkundige Specialismen UMC Utrecht, Kinderchirurgisch Centrum Amsterdam VUMC en AMC.
Anorectal Malformations and Hirschsprung Disease 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 woensdag 11 oktober 2017, te 14.00 uur door Marieke Jolanda Witvliet geboren te Hoorn
Promotiecommissie: Promotor: Prof. Dr. L.W.E. van Heurn AMC-UvA Copromotor: Dr. A.F.W. van der Steeg AMC-UvA Overige leden: Prof. Dr. J. de Vries Universiteit Tilburg Prof. Dr. I de Blaauw Radboud Universiteit Nijmegen Prof. Dr. R.J.B.J. Gemke VUMC Prof. Dr. J. Oosterlaan AMC-UvA Dr. P.J. Tanis AMC-UvA Dr. J.R. de Jong AMC-UvA Dr. H.W. van Lunsen AMC-UvA Faculteit der Geneeskunde
Contents Chapter 1 General introduction and outline of this thesis 6 Chapter 2 Qualitative analysis of studies concerning quality of life in children and adults with Anorectal Malformations 20 Chapter 3 Anxiety and quality of life of parents with children diagnosed with an Anorectal Malformation or Hirschsprung disease 38 Chapter 4 Quality of life and anxiety in parents of children with an Anorectal Malformation or Hirschsprung disease: The first year after diagnosis 50 Chapter 5 Persistent parental stress in parents caring for a young child with an Anorectal Malformation or Hirschsprung disease 62 Chapter 6 Long-term outcome and quality of life in patients with near-total colonic aganglionosis in the Netherlands 78 Chapter 7 Transistional healthcare for patients with Hirschsprung disease and Anorectal Malformations 94 Chapter 8 Predicting sexual problems in young adults with an Anorectal Malformation or Hirschsprung disease 110 Chapter 9 General discussion and future perspectives 126 Chapter 10 Summary / Samenvatting 138 Appendices List of publications 151 Dankwoord 152 About the Author 155