TY - JOUR T1 - What patients with pulmonary fibrosis and their partners think: a live, educative survey in the Netherlands and Germany JF - ERJ Open Research JO - erjor DO - 10.1183/23120541.00065-2016 VL - 3 IS - 1 SP - 00065-2016 AU - Mirjam J.G. van Manen AU - Michael Kreuter AU - Bernt van den Blink AU - Ute Oltmanns AU - Karin Palmowski AU - Eva Brunnemer AU - Simone Hummler AU - Nelleke C. Tak AU - Leon van den Toorn AU - Jelle Miedema AU - Henk C. Hoogsteden AU - Marlies S. Wijsenbeek Y1 - 2017/01/01 UR - http://openres.ersjournals.com/content/3/1/00065-2016.abstract N2 - 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.The needs of patients with pulmonary fibrosis and partners, and the value of interactive interviewing http://ow.ly/M02t307jdEh ER -