title: What patients with pulmonary fibrosis and their partners think: a live, educative survey in the Netherlands and Germany.
abstract: Pulmonary fibrosis greatly impacts patients and their partners. Unmet needs of patients are increasingly acknowledged; the needs of partners often remain unnoticed. Little is known about the best way to educate patients and partners. We investigated pulmonary fibrosis patients' and partners' perspectives and preferences in care, and the differences in these between the Netherlands and Germany. Additionally, we evaluated whether interactive interviewing could be a novel education method in this population. Patients and partners were interviewed during pulmonary fibrosis patient information meetings. In the Netherlands, voting boxes were used and results were projected directly. In Germany, questionnaires were used. In the Netherlands, 278 patients and partners participated; in Germany, 51. Many participants experienced anxiety. Almost all experienced misunderstanding, because people do not know what pulmonary fibrosis is. All expressed a need for information, psychological support and care for partners. Use of the interactive voting system was found to be pleasant (70%) and informative (94%). This study improves the knowledge of care needs of patients with pulmonary fibrosis and their partners. There were no major differences between the Netherlands and Germany. Interactive interviewing could be an attractive method to acquire insights into the needs and preferences of patients and partners, while providing them with information at the same time.
authors.affiliation: Dept of Respiratory Medicine, Erasmus University Medical Center, Rotterdam, Netherlands.
authors.forename: Mirjam J G
authors.initials: MJ
authors.lastname: van Manen
authors.affiliation: Center for Interstitial and Rare Lung Diseases, Pneumology and Respiratory Critical Care Medicine, Thoraxklinik, University of Heidelberg, Heidelberg, Germany; Translational Lung Research Center Heidelberg, Member of the German Center for Lung Research, Heidelberg, Germany.
authors.forename: Michael
authors.initials: M
authors.lastname: Kreuter
authors.affiliation: Dept of Respiratory Medicine, Erasmus University Medical Center, Rotterdam, Netherlands.
authors.forename: Bernt
authors.initials: B
authors.lastname: van den Blink
authors.affiliation: Center for Interstitial and Rare Lung Diseases, Pneumology and Respiratory Critical Care Medicine, Thoraxklinik, University of Heidelberg, Heidelberg, Germany; Translational Lung Research Center Heidelberg, Member of the German Center for Lung Research, Heidelberg, Germany.
authors.forename: Ute
authors.initials: U
authors.lastname: Oltmanns
authors.affiliation: Center for Interstitial and Rare Lung Diseases, Pneumology and Respiratory Critical Care Medicine, Thoraxklinik, University of Heidelberg, Heidelberg, Germany; Translational Lung Research Center Heidelberg, Member of the German Center for Lung Research, Heidelberg, Germany.
authors.forename: Karin
authors.initials: K
authors.lastname: Palmowski
authors.affiliation: Center for Interstitial and Rare Lung Diseases, Pneumology and Respiratory Critical Care Medicine, Thoraxklinik, University of Heidelberg, Heidelberg, Germany; Translational Lung Research Center Heidelberg, Member of the German Center for Lung Research, Heidelberg, Germany.
authors.forename: Eva
authors.initials: E
authors.lastname: Brunnemer
authors.affiliation: Center for Interstitial and Rare Lung Diseases, Pneumology and Respiratory Critical Care Medicine, Thoraxklinik, University of Heidelberg, Heidelberg, Germany.
authors.forename: Simone
authors.initials: S
authors.lastname: Hummler
authors.affiliation: Dept of Respiratory Medicine, Erasmus University Medical Center, Rotterdam, Netherlands.
authors.forename: Nelleke C
authors.initials: NC
authors.lastname: Tak
authors.affiliation: Dept of Respiratory Medicine, Erasmus University Medical Center, Rotterdam, Netherlands.
authors.forename: Leon
authors.initials: L
authors.lastname: van den Toorn
authors.affiliation: Dept of Respiratory Medicine, Erasmus University Medical Center, Rotterdam, Netherlands.
authors.forename: Jelle
authors.initials: J
authors.lastname: Miedema
authors.affiliation: Dept of Respiratory Medicine, Erasmus University Medical Center, Rotterdam, Netherlands.
authors.forename: Henk C
authors.initials: HC
authors.lastname: Hoogsteden
authors.affiliation: Dept of Respiratory Medicine, Erasmus University Medical Center, Rotterdam, Netherlands.
authors.forename: Marlies S
authors.initials: MS
authors.lastname: Wijsenbeek