Heart transplant patients need support in managing severe symptoms

Each year, around 60 Swedes with life-threatening heart failure receive a donated heart in a transplant operation. The heart recipient will be in the final stage of heart failure, but healthy enough to cope with the operation, recovery and a future of life-long medication. During the first year when, for example, rejection of the new heart is at its height, the patients are followed closely. After one year, the survival rate is about 95 per cent, and research is constantly examining how this rate can be raised even further.

Research is less common regarding aftercare in terms of long-term symptom distress, recovery and quality of life. But now, researchers in Lund have followed a patient group for an extended period of five years, with a focus on symptom distress and self-management – the patients’ conditions for managing and living with these problems. 

“With this study we are the first in the world to follow the patients’ long-term pain and the rest of the symptom burden after a heart transplant,” says nurse Anna Forsberg, professor at Lund University in transplant nursing – Europe’s first and to date only professor in this field.

The new studies are part of specialist nurse Marita Dalvindt’s thesis Symptom Distress Before and After Heart Transplantation: A Longitudinal 5-Year Follow-Up, supervised by Anna Forsberg. Marita Dalvindt’s results show that pain is common even 2-4 years after the procedure. Other aspects of symptom distress, such as fatigue, sleep disorders, reduced libido and tremors, were also common.

Most new insights stem from the longitudinal study in which 48 heart transplant patients were followed over a period from before the transplantation to five years after. Here, the researchers have instead used the patients’ own self-assessed symptoms. They could see that the patients who had pain before the procedure were not the same as those who had pain afterwards. Quite simply, there was no connection between pain before or after. Similarly, the poor mental wellbeing that many patients experienced before the transplantation was not seen in the same patient group after the procedure.

“It is common that the poor mental wellbeing of the sick patient is explained by the heart failure itself, but we can dispel this assumption with our results. Many feel bad mentally afterwards for a long time. We have seen that those with several symptoms after the transplantation, what we call a high symptom burden, also feel worse mentally,” says Marita Dalvindt.

Long-term pain was also common, and in addition created a breeding ground for more problematic symptoms. Even without pain, the presence of many symptoms led to a deterioration in mental wellbeing. The extensive suffering led to the researchers immediately wanting to test support in symptom management. As long-term pain is clearly linked with several aspects of symptom distress, 13 of the patients most affected by pain were selected to receive three support sessions that had a systematic and person-centred structure.

“We were clear in the sessions about what we wanted to focus on, but otherwise our conversations were very open and focused on the patients’ own narratives,” says Marita Dalvindt. 

The structure was kept simple in order to increase the feasibility of the initiative. Despite the simplicity, the results were striking, according to the researchers. After the three support sessions, the participating patients stated that for the first time they had the chance to talk about how they actually feel and how their life had been impacted after the transplantation. They stated that they able to feel competent and that they had been taken seriously – after having felt objectified throughout the period of care and that only their physical heart status counted. After the sessions, they were more active in their daily life, were more robust in the self-care of the symptoms and dared to “defy” their symptoms more than before.

“The partnership is key in person-centred care. The patients must be taken seriously, and their experience and knowledge must be given consideration. In some cases, the symptoms will not disappear, but we have now seen what quite simple support in symptom management can do for these patients,” says Anna Forsberg.