Background: Venous thromboembolism (VTE) includes pulmonary embolism (PE) and deep vein thrombosis (DVT), and results in 100,000 deaths annually in the United States. There is low global VTE awareness, including limited data regarding difficulties patients encounter during their management. This study aims to identify a patient's perspective on VTE gaps of care.
Methods: This is a qualitative study using semi-structured interviews with VTE patients, who had been previously diagnosed and treated for at least one VTE event in their lifetime. Participants were separated in five focused groups; sample size was defined by data saturation. Interviews were audio recorded, transcribed verbatim, and analyzed thematically using framework analysis based on data saturation evaluation. The study was approved by a local institutional review board. We used inductive framework analysis to interpret the data.
Results: Twenty participants were included in the analysis. Ten participants (50%) were men. Three major themes were identified: 1) concerned about limited disease knowledge; 2) VTE awareness in healthcare system; 3) incomplete communication during transitional and follow-up care.
Conclusions: Findings suggest that gaps of VTE care extend in different levels of the medical system, including: the patient, physicians, and medical teams. Patients were sensitive to a lack of disease awareness among healthcare providers. There was appreciation for subspecialty care recommended for VTE. In a qualitative study, using the patient perspective, we have detected frustrations and perceived areas of improvement of the care of the patient with VTE. These gaps are anchored in perceived lack of disease awareness and difficult transitional care.