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.

Aim To provide a multidimensional assessment of self‐reported chronic pain 1–5 years after heart transplantation and its relationship with self‐reported well‐being, fatigue, recovery, self‐efficacy and socio‐economic factors and to explore differences between heart recipients and a cohort of lung recipients. Design This multicentre, cross‐sectional, cohort study is a part of the Swedish national Self‐management after thoracic transplantation study. Methods Six questionnaires were distributed at the heart recipients yearly follow‐up (1–5 years) at three Swedish university hospitals 2014‐2017. Results The study group comprised of 79 heart recipients, 25 women and 54 men with a mean age of 52.68 years. Chronic pain among heart recipients was common and those not in paid employment as well as those with low psychological well‐being and high general fatigue reported significantly more pain. Female heart recipients were more affected by pain. General health and vitality, general fatigue, physical fatigue and reduced activity were related to the pain intensity score. Relevance to clinical practice As it is the duty of the healthcare system to provide adequate pain treatment, screening for pain should be a mandatory part of long‐term follow‐up.

No abstract