LAUSR

BACKGROUND Pulmonary embolism (PE) is the third most common cause of cardiovascular death. However, comprehensive knowledge on the lived experience of patients with PE is lacking so far. The objective of this study was to fill this gap using a qualitative research approach. METHODS A qualitative study using focus group methodology was conducted. Sampling of patients followed the maximum variation strategy. Sample size was determined by saturation. The patients were presented eight questions, which asked for their experiences in terms of prodromal and acute symptoms, changes of physical and mental well-being, daily life and social life, and experiences with PE medication and treatment. The focus group discussions were digitally recorded and transcribed verbatim. The constant comparative method was used for data analysis. RESULTS Five focus groups with n = 18 participants (50% female, median age 56 years) in total were performed. Major identified themes were: (1) progressing dyspnea and pain as major prodromal and acute symptoms, (2) persisting dyspnea and loss of physical fitness, (3) depression, fears and threat monitoring, (4) exhaustion which improves over time, (5) social contacts ranging between ignorance and overprotection, (6) anticoagulants as lifesavers and threat, (7) quick versus delayed diagnosis, (8) left alone by health care providers, and (9) unsupportive health care system. CONCLUSION PE may be associated with considerable mental health problems and the existing health care system is experienced as not supportive by a number of patients. Further results from larger, quantitative studies are needed to estimate the extent of the identified problems.