Long-term psychosocial impact of venous thromboembolism: a qualitative study in the community

Objectives Venous thromboembolism (VTE) is a serious, potentially traumatic, life-threatening condition and a major cause of mortality and morbidity. The aim of this study was to obtain detailed understandings of the impact of VTE and examine individual's experiences over the first year since a first-time VTE. Design A longitudinal qualitative interview study using inductive thematic analysis. This study presents follow-up data for 11 participants, first interviewed 6 months following a first-time VTE. Setting Outpatients recruited from a community haematology clinic in a UK District General Hospital. Participants Eleven participants (seven females and four males) recruited from a community haematology clinic. Participants had experienced a first-time VTE and participated in qualitative interviews 3 months previously. Intervention Audio-recorded semistructured interviews with a sample of 11 participants who experienced a first-time deep vein thrombosis or pulmonary embolism within the previous year. Interviews were transcribed and analysed using inductive thematic analysis. Results Four overarching themes were identified: life changing and forever changed, the trauma of care, 'thrombo-neuroses' and through adversity comes growth. Theme content varied according to age and developmental stage, presence of VTE symptoms and the experience of diagnosis. Conclusions The data demonstrate the psychosocial impact of VTE and its diagnosis as physically and psychologically challenging, and individuals reported being forever changed by the experience. Participants' reported continued high levels of trauma and anxiety symptoms, triggered by physical (eg, symptoms) and psychological (eg, health anxiety, negative emotions) reminders of VTE. Wider primary care service issues including misdiagnosis maintained negative emotions and health anxiety with implications for relationships with professionals. Targeted clinical interventions to better identify and support individuals at risk of distress and enhance psychological well-being and reduce distress are discussed.