Symptom occurrence and distress after heart transplantation—a nationwide cross-sectional cohort study

Experiencing symptoms after heart transplantation may hamper the heart recipient’s self-management which can lead to negative effects. We know little about symptom occurrence and distress after heart transplantation, especially in relation to sociodemographic variables. The aim of the study was to explore self-reported symptom occurrence and distress after heart transplantation and their relationship with self-reported psychological well-being and sociodemographic factors. This multicenter, cross-sectional, cohort study is associated with the Swedish national Self-Management After Thoracic Transplantation study (SMATT). Two questionnaires were distributed at the heart recipients’ yearly follow-up, one to five years post-transplant at three Swedish university hospitals from 2014–2017. In a total 79 heart recipients, 54 men and 25 women, with a mean age 53 years returned the questionnaires. Symptoms occurred differently depending on type and duration of follow-up. The most common symptoms, trembling hands, and decreased libido were also the most distressing. Heart recipients most burdened by symptoms were those younger than 50 years, not working, with poor psychological well-being or living alone. Fatigue explained more than 60% of the variation in transplant specific well-being. In conclusion this study points at the target groups within the heart transplant population that needs person centered symptom management support where the focus should be on side-effects of the medication i.e., trembling hands as well as the patients’ sexual health.