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Patient reported outcomes in chronic skin diseases: eHealth applications for
clinical practice
van Cranenburgh, O.D.
Publication date
2016
Document Version
Final published version
Link to publication
Citation for published version (APA):
van Cranenburgh, O. D. (2016). Patient reported outcomes in chronic skin diseases: eHealth
applications for clinical practice.
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PATIENT REPORTED
OUTCOMES IN CHRONIC
SKIN DISEASES
eHealth applications
for clinical practice
Oda Diana van Cranenburgh
PATIENT REPORTED
OUTCOMES IN CHRONIC
SKIN DISEASES
eHealth application
for clinical practice
Oda Diana van Cranenburgh
eHealth application
for clinical practice
Patient rePorted outcomes in chronic skin diseases: ehealth applications for clinical practice
coLoFon
Patient reported outcomes in chronic skin diseases: ehealth applications for clinical practice
Phd thesis, university of amsterdam, the netherlands
ISBN: 978-94-028-0036-4
Author: O.D. van Cranenburgh
Design of cover and title pages: Rémi Bouwer
Lay-out inside: Juliet Campfens,
Persoonlijk Proefschrift
Illustration on cover back: Jorris Verboon
Printing: Ipskamp Drukkers
Publication of this thesis was financially supported by:
Academisch Medisch Centrum; André Matera, Alopecia Vereniging, Anke van den Berg; Ben van Cranenburgh; Celgene; CMTC-OVM; DSW Zorgverzekeraar; Eucerin; hannah Skin Improvement Research Company; Herman Musaph Stichting (HMS); Hidradenitis Patiënten Vereniging (HPV); Huidpatiënten Nederland (HPN); Huidstichting Chanfleury van IJsselsteijn; Jantine van ’t Klooster; Landelijke Vereniging Voor Vitiligo-Patiënten (LVVP); LEO Pharma; Lichen Planus Vereniging Nederland (LPVN); Nederlandse Brandwonden Stichting (Dutch Burns Foundation); Nederlandse Cosmetica Vereniging (NCV); Nederlandse Vereniging voor Psychodermatologie (NVPD); Noordhoff Uitgevers bv; Pfizer; Psoriasis Vereniging Nederland (PVN); Stichting Miletus; Stichting Nationaal Huidfonds, U-Consultancy; Van der Bend B.V.; Vereniging voor licht- en stralingsgevoeligen (CPLD); Vereniging voor Mensen met Constitutioneel Eczeem (VMCE); Waldmann B.V.
Copyright © 2016 O.D. van Cranenburgh, 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, electronic, mechanical, photocopying, recording, or otherwise, without the prior written permission of the holder of the copyright. The copyright of the articles that have been published may has been transferrred to the respective journals, if applicable.
PATIENT REPORTED OUTCOMES IN CHRONIC SKIN DISEASES: eHealth applications for clinical practice
ACADEMISCH PROEFSCHRIFT ter verkrijging van de graad van doctor
aan de Universiteit van Amsterdam op gezag van de Rector Magnificus
prof. dr. D.C. van den Boom
ten overstaan van een door het College voor Promoties ingestelde commissie, in het openbaar te verdedigen in de Agnietenkapel
op donderdag 24 maart 2016, te 14:00 uur door Oda Diana van Cranenburgh
Promotiecommissie:
Promotores: Prof. dr. M.A. de Rie Universiteit van Amsterdam Prof. dr. M.A.G. Sprangers Universiteit van Amsterdam Copromotores: Dr. J. de Korte Universiteit van Amsterdam Prof. dr. E.M.A. Smets Universiteit van Amsterdam Overige leden: Prof. dr. M.A. Grootenhuis Universiteit van Amsterdam Prof. dr. R.J. de Haan Universiteit van Amsterdam Prof. dr. P.I. Spuls Universiteit van Amsterdam Prof. dr. L. Witkamp Universiteit van Amsterdam Prof. dr. A.W.M. Evers Universiteit Leiden
Prof. dr. S.G.M.A. Pasmans Erasmus Universiteit Rotterdam Faculteit der Geneeskunde
5
contents
1. GeneraL introduction 9
Part i
Patient rePorted outcomes in chronic skin diseases 2. satisfaction with treatment among patients with psoriasis:
a web-based survey study
O.D. van Cranenburgh, J. de Korte, M.A.G. Sprangers, M.A. de Rie, E.M.A. Smets. British Journal of Dermatology 2013; 169:398–405.
19
3. a) Patients with lichen sclerosus experience moderate satisfaction with treatment and impairment of quality of life: results of a cross-sectional study
O.D. van Cranenburgh / S.B.W. Nijland, J. de Korte, R. Lindeboom, M.A. de Rie, J.A. ter Stege, C.A.C. Prinsen. Submitted.
37
b) satisfaction with treatment and health-related quality of life among patients with lichen planus: a web-based survey study
O.D. van Cranenburgh, S.B.W. Nijland, J. de Korte, R. Lindeboom, M.A. de Rie, J.A. ter Stege, C.A.C. Prinsen. Accepted for publication in European Journal of Dermatology.
55
4. consumer Quality index chronic skin diseases (cQi-csd): a new instrument to measure quality of care from the patients’ perspective
O.D. van Cranenburgh, M.W. Krol, M.C.P. Hendriks, M.A. de Rie, E.M.A. Smets, J. de Korte, M.A.G. Sprangers. British Journal of Dermatology 2015; 173: 1032–1040.
67
Part ii
eheaLth aPPLications For cLinicaL Practice
5. health-related quality of life assessment in dermatological practice: relevance and application
O.D. van Cranenburgh / C.A.C. Prinsen, M.A.G. Sprangers, Ph.I. Spuls, J. de Korte. Dermatologic Clinics 2012; 30(2):323–332.
101
6. Patient reported outcome measurement in clinical dermatological practice: relevance and feasibility of a web-based portal
O.D. van Cranenburgh, J.A. ter Stege, J. de Korte, M.A. de Rie, M.A.G. Sprangers, E.M.A. Smets. Dermatology 30 Oct 2015
[EPub ahead of print].
6
7. a web-based, educational, quality-of-life intervention for patients with a chronic skin disease: feasibility and acceptance in routine dermatological practice
O.D. van Cranenburgh, E.M.A. Smets, M.A. de Rie, M.A.G. Sprangers, J. de Korte. Acta Dermato-Venereologica 2015; 95: 51–56.
139
8. experiences with a web-based, educational, quality-of-life
intervention for patients with chronic skin disease: implementation is not easy!
O.D. van Cranenburgh, J.A. ter Stege, E.M.A. Smets, M.A. de Rie, M.A.G. Sprangers, J. de Korte. Accepted for publication in Acta Derma-to-Venereologica.
161
9. GeneraL discussion 167
10. summarY and concLusions /
samenVattinG en concLusies 181
addendum
List of contributing authors Acknowledgements/Dankwoord List of publications Portfolio Curriculum Vitae Stellingen 193 197 201 203 207 208
