UvA-DARE (Digital Academic Repository) Patient reported outcomes in chronic skin diseases: ehealth applications for clinical practice van Cranenburgh, O.D. 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 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: 10 Jan 2019
PATIENT REPORTED OUTCOMES IN CHRONIC SKIN DISEASES ehealth application applications for clinical practice Oda Diana van Cranenburgh
Patient reported outcomes in chronic skin diseases: ehealth applications for clinical practice Oda Diana van Cranenburgh
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 geboren te Amsterdam
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
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. 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. 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. 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. 19 37 55 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. 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]. 101 117 5
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. 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 Dermato-Venereologica. 139 161 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 6