Adolescents’ and young adults’ life experiences following venous thromboembolism. “It will always lie in wait”

Background: Long-term mental well-being of adolescence and young adults diagnosed with venous thromboembolism (VTE) as experienced by the patients has received little attention.
Objectives: The purpose of this study was to explore the essential meaning of adolescents’ and young adults’ lived experiences following VTE to gain an in-depth understanding of their long-term mental well-being.
Methods: Semi-structured interviews were conducted with 12 Danish patients who were diagnosed with VTE in adolescence or young adulthood. Interviews were analyzed according to a phenomenological hermeneutical approach inspired by the French philosopher Paul Ricœur´s theory of interpretation.
Results: Four themes emerged. Participants described an experience of a creeping loss of youth immortality, a perception of being different, to live with a body in a state of alarm, and to feel symptom management insecurity.
Discussion: Mental well-being of adolescence and young adults diagnosed with VTE is negatively impacted in the long-term. Fear of VTE recurrence predominates and is an important source of psychological distress. This study highlights the clinical importance of including the long-term mental well-being in the overall assessment when developing rehabilitations programs for adolescents and young adults diagnosed with VTE.