transitional care for young adults with juvenile idiopathic arthritis

198 Pages·2016·1.56 MB·English

EXPLORING PATIENTS’
PREFERENCES ON CARE:
A roadmap to tailored online
self-management interventions
JUDY AMMERLAAN
Parts of the studies presented in this thesis was financially supported by the Dutch Arthritis Foundation,
the University Medical Center Utrecht and the Innovation Fund Health Insurers,
Printing of this thesis was funded by the Dutch Arthritis Foundation, University Medical Center and AbbVie B.V.
ISBN: 978-90-393-6683-7
COVER AND LAYOUT DESIGN
Myrthe van der Voort
[email protected]
Sanne Heuker
[email protected]
behance.net/bysannee
PRINTED BY
Proefschriftmaken.nl - Uitgeverij BOXPress Vianen
© 2016 JW Ammerlaan
All rights reserved. No part of this book may be reproduced or transmitted
in any form or by any means, without permission of the author.
J.W. Ammerlaan
University Medical Center Utrecht
Rheumatology & Clinical Immunology
PO Box 85500 (D02.244)
3508 GA Utrecht
The Netherlands
EXPLORING PATIENTS’
PREFERENCES ON CARE:
A roadmap to tailored online
self-management interventions
Het verkennen van voorkeuren van patiënten voor zorg:
een roadmap naar online zelfmanagement interventies op maat
(met een samenvatting in het Nederlands)
Proefschrift
ter verkrijging van de graad van doctor aan de Universiteit Utrecht
op gezag van de rector magnificus Prof. Dr. G.J. van der Zwaan,
ingevolge het besluit van het college voor promoties
in het openbaar te verdedigen op
donderdag 8 december 2016 des middags te 4.15 uur
door
Johanna Wilhelmina Ammerlaan
geboren op 18 januari 1966
te De Bilt
Promotoren Prof. dr. J.W.J. Bijlsma & Prof. dr. A.B.J. Prakken
Copromotoren Dr. H. van Os-Medendorp & Dr. A.A. Kruize

“ For me self-
management stands
for growing up but also
to equip myself with
strategies and tools
so I can survive a storm
that I call rheumatism.
For me, it is better to
bend a little than
to break...”

- Female, 19 years old, since 9 years Juvenile Idiopathic Arthritis

CONTENT
CHAPTER 1 General introduction 11
CHAPTER 2 An urge for change: Transitional care for young adults 21
with juvenile idiopathic arthritis
CHAPTER 3 Feasibility of a Website and a Hospital-Based Online 29
Portal for Young Adults with Juvenile Idiopathic Arthritis:
Views and Experiences of Patients
CHAPTER 4 Feasibility of an online and a face-to-face version of a 49
self-management program for young adults with a rheu-
matic disease: experiences of young adults and peer leaders
CHAPTER 5 Short term effectiveness and experiences of a peer guided 65
web-based self-management intervention for young
adults with Juvenile Idiopathic Arthritis
CHAPTER 6 Validation of the Dutch version of the Health Education 87
Impact Questionnaire (heiQ) and comparison of the Dutch
translation with the English, German and French heiQ
CHAPTER 7 Preferences and needs of patients with a rheumatic dis- 111
ease regarding content and structure of online self-man-
agement support
CHAPTER 8 Building a tailored, patient-guided, web-based self-man- 129
agement intervention ‘ReumaUitgedaagd!’ for adults with
a rheumatic disease: results of a usability study and design
for a randomized controlled trial
CHAPTER 9 The most important needs and preferences of patients 149
for support from health care professionals: a reflective
practice on transitional care for young adults with
Juvenile Idiopathic Arthritis
CHAPTER 10 General Discussion 159
SUMMARY 175
SAMENVATTING 181
DANKWOORD 187
CURRICULUM 193
VITAE