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Omslag:Karen MoorFC Formaat: 170 x 240 mmRugdikte: 16,8 mm Boekenlegger: 60 x 230 mmDatum: 22-06-2020
Uitnodiging
Voor het bijwonen van de openbareverdediging van het proefschrift
Innovative approaches to
patient-centered care
and research in
interstitial lung disease
door
Karen Moor
Dinsdag 15 september 2020om 13:30 uur
Locatie
Professor Andries Queridozaal Onderwijscentrum Erasmus Medisch Centrum
Dr. Molewaterplein 40 Rotterdam
Na afl oop bent u van harte welkom op de receptie ter plaatse
Paranimfen
Joost Kuipers Jente Klok Karen Kuipers-Moor Duyststraat 59 3023 EC Rotterdam c.moor@erasmusmc.nlInterstitial lung diseases (ILDs) are a
large, heterogeneous group of more
than 200 diseases, that diffusely affect
the lungs. This thesis primarily focuses
on (idiopathic) pulmonary fibrosis and
sarcoidosis. ILDs often have a major
impact on quality of life, due to
symp-toms as dyspnea, cough, and fatigue.
The first aim of this thesis was to
evaluate gaps in care, unmet needs,
patient perspectives, and patient
experiences with the care pathway.
These insights are highly needed to
facilitate a patient-centered approach
to care and research in ILD.
The second part of this thesis describes
the development and evaluation of
eHealth solutions, aimed at improving
health outcomes, optimizing quality of
life, and enabling personalized
treat-ment for patients with ILD.
Karen Moor
Innovative approaches to
patient-centered care and
research in interstitial
lung disease
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Innovative Approaches to Patient-centered Care and
Research in Interstitial Lung Disease
The work described in this thesis was conducted at the Department of Respiratory Medicine, Erasmus MC, Rotterdam, the Netherlands.
Innovative approaches to patient-centered care and research in interstitial lung disease ISBN: 978-94-6361-437-5
Unrestricted grants for research described in this thesis have been received from: The Netherlands Organization for Health Research and Development (ZonMw), Erasmus MC Thorax Foundation, Hoffman la Roche, and Boehringer Ingelheim.
Lay out and printing: Optima Grafische Communicatie, Rotterdam, the Netherlands (www.ogc.nl)
Cover design and copy right holder: Jente Klok (www.jenteklok.com)
All rights reserved. No part of this thesis may be reproduced, stored in a retrieval system of any nature, or transmitted in any form or by any means, without permission of the author, or when appropriate, the publishers of the publications.
Innovative Approaches to Patient-centered Care and
Research in Interstitial Lung Disease
Innovaties in patiëntgerichte zorg en
onderzoek in interstitiële longziekten
Proefschrift
ter verkrijging van de graad van doctor aan de Erasmus Universiteit Rotterdam
op gezag van de rector magnificus Prof.dr. R.C.M.E. Engels
en volgens besluit van het College voor Promoties. De openbare verdediging zal plaatsvinden op
dinsdag 15 september 2020 om 13:30 uur
door
Catharina Christina Moor
PROMOTIECOMMISSIE
Promotor Prof. dr. J.G.J.V. Aerts
Overige leden Prof. dr. V. Cottin Prof. dr. M. Kreuter
Prof. dr. S.C.E. Klein Nagelvoort - Schuit
TAbLE Of COnTEnTS
PART 1 InTRODuCTIOn
General introduction
Chapter 1 Comprehensive care of interstitial lung disease
Published as book chapter in Encyclopedia of Respiratory Medicine
Chapter 2 Comprehensive care for patients with sarcoidosis
J. Clin. Med. 2020, 9(2), 390.
PART 2 GAPS In CARE In InTERSTITIAL LunG DISEASE
Chapter 3 Gaps in care of patients living with pulmonary fibrosis: a joint pa-tient and expert statement on the results of a Europe-wide survey
ERJ Open Res. 2019 Oct 21;5(4):00124-2019.
Chapter 4 Integrating patient perspectives into personalized medicine in Idiopathic Pulmonary Fibrosis
Front Med. 2017 Dec 20;4:226.
Chapter 5 Patient expectations, experiences and satisfaction with nintedanib and pirfenidone in idiopathic pulmonary fibrosis: a quantitative study
Respir Res. 2020: in press
Chapter 6 Needs, Perceptions and Education in Sarcoidosis: A Live Interactive Survey of Patients and Partners
Lung 2018; 196(5): 569–575
Chapter 7 Managing fatigue in patients with interstitial lung disease
Chest 2020 May 6;S0012-3692(20)30873-4 11 25 55 79 111 133 149 165
PART 3 DEvELOPMEnT AnD EvALuATIOn Of EHEALTH SOLuTIOnS In InTERSTITIAL LunG DISEASE
Chapter 8 Development and feasibility of an eHealth tool for idiopathic pul-monary fibrosis
Eur Respir J. 2018; Mar 29;51(3):1702508.
Chapter 9 A home monitoring program including real-time wireless home spirometry in idiopathic pulmonary fibrosis: a pilot study on expe-riences and barriers
Respir Res. 2018, May 29;19(1):105.
Chapter 10 Feasibility of a comprehensive home monitoring program for
sarcoidosis
J Pers Med. 2019 May 5;9(2):23.
Chapter 11 Diurnal variation in forced vital capacity in patients with fibrotic
interstitial lung disease using home spirometry
ERJ Open Res. 2020 Jan; 6(1): 00054-2020.
Chapter 12 Home monitoring in patients with idiopathic pulmonary fibrosis: a
randomized controlled trial
Am J Respir Crit Care Med. 2020 Apr 23.
Chapter 13 Exhaled breath analysis by use of eNose technology: a novel
diag-nostic tool for interstitial lung disease
Eur Respir J. 2020: in press
PART 4 DISCuSSIOn
Chapter 14 General discussion Summary
Samenvatting PhD portfolio List of publications About the author Dankwoord 183 191 201 219 229 255 255 304 312 320 324 328 330
