Live patient and partner survey on pulmonary fibrosis

Introduction / Rationale Pulmonary Fibrosis (PF) not only has impact on physical but also on social and emotional well-being of patient and partner. In general, their needs in these domains are ill documented. The objective of this project was to interactively acquire knowledge about patient9s and partner9s perspectives on and preferences in care for social and emotional well-being. Methods During a pulmonary fibrosis patient meeting in our hospital we interviewed patients and partners using voting boxes. Participants could answer anonymously to the 28 questions posed. The system recorded the number of voters. The results were directly presented. Permission to use the data was obtained at forehand. Results 65 patients with PF and 63 partners were present. In brackets number of voters is shown. Self-reported diagnoses were Idiopathic PF (46), collagen vascular disease (9), exposure related (6) and unknown (3). 68% of patients (63) would prefer talking about end of life in an early stage of disease. Patients (50) and partners (50) reported the same levels of anxiety on a general anxiety and distress score. Patients (50) and partners (52) feel equally poor understood (94% vs 90%) because people do not know what PF is. 78% of the voters (67) would be interested in patient and partner support groups in their own hospital. After this meeting 47% of the participants (89) felt more secure and in control, 11% felt less secure and in control. The majority considered the meeting very useful (93% of N=100). Conclusion The interactive interviewing of patients with PF along with their partners can provide the opportunity not only to improve care but also to offer better support regarding the problems that patients and partners encounter.