Heart transplant patients need extra support to manage serious symptoms, researchers say

If a patient with heart failure survives the transplantation of a new heart, the transplant is considered successful. However, medical care is overlooking heart transplant recipients who suffer from long-term and often severe symptoms such as pain and fatigue. New research from Sweden's Lund University shows that simple support in symptom management can make a big difference to patient well-being.

Every year, around 60 Swedes with life-threatening heart failure receive a donated heart in a transplant operation. Heart recipients are in the final stages of heart failure but are healthy enough to endure surgery, recovery, and future lifelong medications.

For example, patients are closely monitored during the first year, when rejection of a new heart is most likely to occur. The survival rate after one year is about 95%, and research continues to find out how this rate can be further increased.

Research on aftercare regarding long-term symptom distress, recovery, and quality of life is less common. But now Lund researchers followed a group of patients over five years, focusing on symptom distress and self-management, or the conditions patients have to manage and live with these problems.

“This study is the first in the world to track long-term pain and residual symptom burden in patients after heart transplantation,” said Anna, a nurse at Lund University who specializes in transplant nursing and is the first in Europe.・Professor Forsberg says: He is the only professor in this field.

The new study is part of a paper by specialist nurse Marita Dalvint. ”Symptoms and pain before and after heart transplantation: 5-year long-term follow-up studyDalvint's results show that pain is common even 2 to 4 years after the procedure. Other aspects of symptomatic distress were also common, including fatigue, sleep disturbances, decreased sexual desire, and tremors.

Most of the new insights came from a longitudinal study that followed 48 heart transplant patients for 5 years from pre-transplant. Here, the researchers instead used patients' self-rated symptoms. They were able to confirm that patients who had pain before surgery were not the same patients who had pain after surgery.

Simply put, there was no relationship before or after the pain. Similarly, the poor mental health experienced by many patients before transplantation was not seen in the same group of patients after transplantation.

“The poor mental state of patients with the disease is commonly explained by the heart failure itself, but our results dispel this assumption. Many people remain mentally unwell for a long time afterwards. “We know that patients who have some symptoms, so-called 'high symptom burden', are also mentally worse after transplantation,” says Dalvint.

long term pain

Long-term pain was also common and a breeding ground for more problematic symptoms. Even if you don't have pain, many symptoms can worsen your mental health. Because of the widespread distress, researchers wanted to immediately test support for symptom management.

As long-term pain is clearly associated with several aspects of symptom distress, 13 of the patients most affected by pain were selected to receive three support sessions with a systematic and person-centered structure. I decided to have a session.

“We were clear about what we wanted the sessions to focus on, but otherwise our conversations were very open and focused on the patients' own stories.” Dalvint says.

The structure was kept simple to increase the feasibility of the initiative. Despite the simplicity, the results were surprising, according to the researchers. After three support sessions, participants said they had the opportunity to talk for the first time about how they really felt after the transplant and how it had affected their lives.

Although they felt objectified throughout their care, they were able to feel competent and taken seriously, and their physical heart condition was the only thing that mattered. He said that. After the sessions, they became more active in their daily lives, more engaged in self-care of their symptoms, and dared to “resist” their symptoms more than before.

“Partnership is key in person-centred care. We must take the patient seriously and consider their experience and knowledge. In some cases, symptoms may not go away, but there are many simple ways to manage them.” “We now know what kind of support there is and what we can do to help these patients,” Forsberg says.