Symptom Occurrence and Distress after Heart Transplantation—A Nationwide Cross-Sectional Cohort Study

Abstract

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.

Symptoms Experienced at Home and Self-Care Requisites of Patients After Heart Transplantation: A Retrospective Study

“…Fatigue is one of the frequently reported symptoms after heart transplantation, 15,16 and it is reported in the literature that fatigue should be evaluated in this patient group. 13 Similar to the literature, fatigue was determined to be one of the most frequently reported symptoms in our study. Many factors contribute to the emergence of fatigue after heart transplantation, and it is claimed that fatigue is one of the most common symptoms associated with immunosuppressive treatment in organ transplant patients.…”

“…11 In another study, it was found that shortness of breath, bloating, nausea-vomiting, appetite problems, diarrhea, itchy skin, headache, pain, tremor in the hands, dizziness, feeling sad, and decreased libido were commonly experienced symptoms in the first 2 years after heart transplantation. 13 Similarly, in our study, in which the symptoms in the first 5 years of heart transplantation were evaluated, it was determined that fatigue, pain in the back, neck, and joints, restlessness/agitation, weight gain, and edema in the lower extremities were the most common symptoms, and skin spotting, insomnia, pain at the surgical site, palpitation, and appetite problems were other symptoms observed in more than half of the patients in this study. Fatigue is one of the frequently reported symptoms after heart transplantation, 15,16 and it is reported in the literature that fatigue should be evaluated in this patient group.…”

“…10 Therefore, determining symptoms of heart transplant patients after discharge should be considered among the priorities of follow-up care. 13 Although the diseases are the same, the course and recovery process differs in every individual in terms of physiological and psychological aspects after heart transplantation. In this context, evaluation of symptoms and self-care requisites of patients with heart transplantation is of great importance in terms of contributing to symptom management and meeting the needs of patients as soon as possible, as well as planning interventions to prevent and promote health in this patient group.…”

Implementation of patient‐reported outcome measures in a heart transplant recipient registry: First step toward a patient‐centered approach

“…Each response is assessed on a five‐point scale ranging from “not at all” to “very much.” Patient scores are summed, and lower scores indicate better well‐being. Studies support the psychometric properties of the OTSWI as an instrument for measuring SD and well‐being in solid‐organ transplantation 58,59 . All eight subscales have satisfactory internal consistency measured by Cronbach's alpha >.81 57 .…”

“…Studies support the psychometric properties of the OTSWI as an instrument for measuring SD and well-being in solid-organ transplantation. 58,59 All eight subscales have satisfactory internal consistency measured by Cronbach's alpha >.81. 57 It has satisfactory internal convergent validity as well as good discriminatory validity for each item and overall.…”