I am a lung transplant physician and co‑director of the cardiothoracic transplant programme at Harefield Hospital in London, United Kingdom. Cardiothoracic refers to care involving the heart, lungs and chest and our programme specialises in transplants for people with severe heart and lung disease. My team cares for around 500 people who have received a lung transplant with whom we maintain a close, life-long relationship.
Lung transplantation is always evolving. The biggest breakthrough in my career has undoubtedly been the effect of new drugs for patients living with cystic fibrosis (called CFTR modulators) which meant that the majority of these patients do not require a lung transplant anymore.
However, there are still many patients who need a transplant and some of which we sadly never manage to match with a donor organ.
Another change has been the patient voice which has increasingly become stronger and as clinicians we are becoming better at listening to their experiences and priorities.
I am honoured and humbled to be part of this group. The patient voice is extremely important in raising awareness about lung transplantation, because nothing compares to the lived experience of a lung transplant recipient.
The current survey is unique in that it was co-developed by patients and clinicians and is the first survey of its kind at a European level. I hope it will open much-needed dialogue on the quality of care we offer to patients and show us ways to do better.
For me personally, working with patients from different countries to advocate for lung transplantation and strengthening the patient voice has been really extraordinary.
We know that access to lung transplantation varies greatly across countries and regions. Certain groups of patients are particularly disadvantaged, depending on where they live, their background or their socioeconomic status. We still have very limited information about what affects patients’ access to lung transplantation and long-term follow-up care. Most countries only report the number of transplants performed and some also report short-term survival results. This lack of information is one of the biggest barriers to understanding inequalities in lung transplantation.
Yes, we know that long-term follow-up care differs across regions and countries but we know very little about how and why it differs. We also know there is variability in long-term survival outcomes, but other measures of quality of care such as patient reported outcomes and experiences are not often recorded.
A first step is to map how transplant centres work across different regions and health systems. This would help us understand variation and learn from good practice. The survey is an important starting point for this work. I would welcome a European initiative, supported by the European Respiratory Society (ERS), that enables transplant centres to share knowledge and improve long‑term care beyond survival alone.
I would like to see a Europe‑wide platform that encourages ongoing communication between transplant centres. This could lead to innovation and large-scale research that reflects the diversity of patients across Europe.
Lung transplantation transforms lives. Evidence shows that more than half of transplant recipients return to work a year after their transplant. This benefits not only patients and their families, but also society more broadly.
But we must acknowledge that lung transplant recipients need complex, highly specialised care for the rest of their lives. Right now, across Europe, long‑term care is not well documented and varies greatly. There is clear room for improvement and we have a responsibility to do better.
Learn more about lung transplantation: https://europeanlung.org/en/information-hub/living-with-a-lung-condition/lung-transplant/
Learn more about the ELF Chair’s Campaign: https://europeanlung.org/en/projects-and-campaigns/chairs-campaign
