Skip to main content

Main menu

  • Home
  • Current issue
  • Early View
  • Archive
  • Authors/reviewers
    • Instructions for authors
    • Submit a manuscript
    • Institutional open access agreements
    • Peer reviewer login
  • Alerts
  • Subscriptions
  • ERS Publications
    • European Respiratory Journal
    • ERJ Open Research
    • European Respiratory Review
    • Breathe
    • ERS Books
    • ERS publications home

User menu

  • Log in
  • Subscribe
  • Contact Us
  • My Cart

Search

  • Advanced search
  • ERS Publications
    • European Respiratory Journal
    • ERJ Open Research
    • European Respiratory Review
    • Breathe
    • ERS Books
    • ERS publications home

Login

European Respiratory Society

Advanced Search

  • Home
  • Current issue
  • Early View
  • Archive
  • Authors/reviewers
    • Instructions for authors
    • Submit a manuscript
    • Institutional open access agreements
    • Peer reviewer login
  • Alerts
  • Subscriptions

What patients with pulmonary fibrosis and their partners think: a live, educative survey in the Netherlands and Germany

Mirjam J.G. van Manen, Michael Kreuter, Bernt van den Blink, Ute Oltmanns, Karin Palmowski, Eva Brunnemer, Simone Hummler, Nelleke C. Tak, Leon van den Toorn, Jelle Miedema, Henk C. Hoogsteden, Marlies S. Wijsenbeek
ERJ Open Research 2017 3: 00065-2016; DOI: 10.1183/23120541.00065-2016
Mirjam J.G. van Manen
1Dept of Respiratory Medicine, Erasmus University Medical Center, Rotterdam, Netherlands
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Michael Kreuter
2Center for Interstitial and Rare Lung Diseases, Pneumology and Respiratory Critical Care Medicine, Thoraxklinik, University of Heidelberg, Heidelberg, Germany
3Translational Lung Research Center Heidelberg, Member of the German Center for Lung Research, Heidelberg, Germany
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Bernt van den Blink
1Dept of Respiratory Medicine, Erasmus University Medical Center, Rotterdam, Netherlands
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Ute Oltmanns
2Center for Interstitial and Rare Lung Diseases, Pneumology and Respiratory Critical Care Medicine, Thoraxklinik, University of Heidelberg, Heidelberg, Germany
3Translational Lung Research Center Heidelberg, Member of the German Center for Lung Research, Heidelberg, Germany
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Karin Palmowski
2Center for Interstitial and Rare Lung Diseases, Pneumology and Respiratory Critical Care Medicine, Thoraxklinik, University of Heidelberg, Heidelberg, Germany
3Translational Lung Research Center Heidelberg, Member of the German Center for Lung Research, Heidelberg, Germany
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Eva Brunnemer
2Center for Interstitial and Rare Lung Diseases, Pneumology and Respiratory Critical Care Medicine, Thoraxklinik, University of Heidelberg, Heidelberg, Germany
3Translational Lung Research Center Heidelberg, Member of the German Center for Lung Research, Heidelberg, Germany
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Simone Hummler
2Center for Interstitial and Rare Lung Diseases, Pneumology and Respiratory Critical Care Medicine, Thoraxklinik, University of Heidelberg, Heidelberg, Germany
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Nelleke C. Tak
1Dept of Respiratory Medicine, Erasmus University Medical Center, Rotterdam, Netherlands
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Leon van den Toorn
1Dept of Respiratory Medicine, Erasmus University Medical Center, Rotterdam, Netherlands
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Jelle Miedema
1Dept of Respiratory Medicine, Erasmus University Medical Center, Rotterdam, Netherlands
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Henk C. Hoogsteden
1Dept of Respiratory Medicine, Erasmus University Medical Center, Rotterdam, Netherlands
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Marlies S. Wijsenbeek
1Dept of Respiratory Medicine, Erasmus University Medical Center, Rotterdam, Netherlands
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
  • For correspondence: m.wijsenbeek-lourens@erasmusmc.nl
  • Article
  • Figures & Data
  • Info & Metrics
  • PDF
Loading

Figures

  • Tables
  • Supplementary Materials
  • FIGURE 1
    • Download figure
    • Open in new tab
    • Download powerpoint
    FIGURE 1

    Patients' and partners' experience of anxiety in the Netherlands (NL) and Germany (GE), based on the Generalised Anxiety Disorder-single item questionnaire [13]. Subject responses to the question “How often in the past 2 weeks did you have problems relaxing?”

  • FIGURE 2
    • Download figure
    • Open in new tab
    • Download powerpoint
    FIGURE 2

    Experience of misunderstanding by patients and partners in the Netherlands (NL) and Germany (GE). Subject responses to the question “How often do you feel misunderstood because people do not know what pulmonary fibrosis is?”

  • FIGURE 3
    • Download figure
    • Open in new tab
    • Download powerpoint
    FIGURE 3

    Preference of talking about matters concerning the end of life in patients from the Netherlands (NL) and Germany (GE). Responses to the statement “I would prefer to talk about matters concerning end of life at an early stage of my disease”.

  • FIGURE 4
    • Download figure
    • Open in new tab
    • Download powerpoint
    FIGURE 4

    Need for information on disease and prospects in patients and partners from the Netherlands (NL) and Germany (GE). Responses to the statement “I would like to know everything about my disease and its prospects”.

  • FIGURE 5
    • Download figure
    • Open in new tab
    • Download powerpoint
    FIGURE 5

    Feedback on interactive voting system in the Netherlands.

  • FIGURE 6
    • Download figure
    • Open in new tab
    • Download powerpoint
    FIGURE 6

    Perception of patients and partners from the Netherlands (NL) and Germany (GE) of the usefulness of the information meeting.

  • FIGURE 7
    • Download figure
    • Open in new tab
    • Download powerpoint
    FIGURE 7

    General feeling of patients and partners from the Netherlands (NL) and Germany (GE) after the information meeting.

Tables

  • Figures
  • Supplementary Materials
  • TABLE 1

    Demographics of patients and partners

    The Netherlands (2013 + 2014 + 2015)Germany (2014)
    Patients134 (48)27 (53)
    Partners144 (52)24 (47)
    Diagnoses#
     IPF88 (70)20 (80)
     CTD-PF14 (11)2 (8)
     Exposure related14 (11)3 (12)
     Unknown10 (8)0 (0)
    • Data are presented as n (%). IPF: idiopathic pulmonary fibrosis; CTD-PF: connective tissue disease-associated pulmonary fibrosis. #: based on survey question.

Supplementary Materials

  • Figures
  • Tables
  • Supplementary Material

    Please note: supplementary material is not edited by the Editorial Office, and is uploaded as it has been supplied by the author.

    Table S1 00065-2016_table_S1

    Table S2 00065-2016_table_S2

  • Supplementary Material

    M. Kreuter 00065-2016_Kreuter

    B. Van den Blink 00065-2016_van_den_Blink

    M.S. Wijsenbeek 00065-2016_Wijsenbeek

PreviousNext
Back to top
Vol 3 Issue 1 Table of Contents
ERJ Open Research: 3 (1)
  • Table of Contents
  • Index by author
Email

Thank you for your interest in spreading the word on European Respiratory Society .

NOTE: We only request your email address so that the person you are recommending the page to knows that you wanted them to see it, and that it is not junk mail. We do not capture any email address.

Enter multiple addresses on separate lines or separate them with commas.
What patients with pulmonary fibrosis and their partners think: a live, educative survey in the Netherlands and Germany
(Your Name) has sent you a message from European Respiratory Society
(Your Name) thought you would like to see the European Respiratory Society web site.
CAPTCHA
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.
Print
Citation Tools
What patients with pulmonary fibrosis and their partners think: a live, educative survey in the Netherlands and Germany
Mirjam J.G. van Manen, Michael Kreuter, Bernt van den Blink, Ute Oltmanns, Karin Palmowski, Eva Brunnemer, Simone Hummler, Nelleke C. Tak, Leon van den Toorn, Jelle Miedema, Henk C. Hoogsteden, Marlies S. Wijsenbeek
ERJ Open Research Jan 2017, 3 (1) 00065-2016; DOI: 10.1183/23120541.00065-2016

Citation Manager Formats

  • BibTeX
  • Bookends
  • EasyBib
  • EndNote (tagged)
  • EndNote 8 (xml)
  • Medlars
  • Mendeley
  • Papers
  • RefWorks Tagged
  • Ref Manager
  • RIS
  • Zotero
Share
What patients with pulmonary fibrosis and their partners think: a live, educative survey in the Netherlands and Germany
Mirjam J.G. van Manen, Michael Kreuter, Bernt van den Blink, Ute Oltmanns, Karin Palmowski, Eva Brunnemer, Simone Hummler, Nelleke C. Tak, Leon van den Toorn, Jelle Miedema, Henk C. Hoogsteden, Marlies S. Wijsenbeek
ERJ Open Research Jan 2017, 3 (1) 00065-2016; DOI: 10.1183/23120541.00065-2016
del.icio.us logo Digg logo Reddit logo Technorati logo Twitter logo CiteULike logo Connotea logo Facebook logo Google logo Mendeley logo
Full Text (PDF)

Jump To

  • Article
    • Abstract
    • Abstract
    • Introduction
    • Methods
    • Results
    • Discussion
    • Supplementary material
    • Disclosures
    • Footnotes
    • References
  • Figures & Data
  • Info & Metrics
  • PDF

Subjects

  • Interstitial and orphan lung disease
  • Tweet Widget
  • Facebook Like
  • Google Plus One

More in this TOC Section

  • Endobronchial autologous BM-MSCs in IPF patients
  • Effect of β-blockers on the risk of COPD exacerbations
  • Recurrence of symptoms after childhood LRTI
Show more Original articles

Related Articles

Navigate

  • Home
  • Current issue
  • Archive

About ERJ Open Research

  • Editorial board
  • Journal information
  • Press
  • Permissions and reprints
  • Advertising

The European Respiratory Society

  • Society home
  • myERS
  • Privacy policy
  • Accessibility

ERS publications

  • European Respiratory Journal
  • ERJ Open Research
  • European Respiratory Review
  • Breathe
  • ERS books online
  • ERS Bookshop

Help

  • Feedback

For authors

  • Instructions for authors
  • Publication ethics and malpractice
  • Submit a manuscript

For readers

  • Alerts
  • Subjects
  • RSS

Subscriptions

  • Accessing the ERS publications

Contact us

European Respiratory Society
442 Glossop Road
Sheffield S10 2PX
United Kingdom
Tel: +44 114 2672860
Email: journals@ersnet.org

ISSN

Online ISSN: 2312-0541

Copyright © 2023 by the European Respiratory Society