The EU PAL-COPD project aims to improve end-of-life care and symptom management for people with chronic obstructive pulmonary disease (COPD).
EU PAL-COPD have launched their first newsletter after a successful first year of the five-year research project funded by Horizon Europe. Launched in January 2024, the project aims to improve palliative care for people living with chronic obstructive pulmonary disease (COPD) by allowing patients and families to become more involved in treatment decision-making.
COPD is a long-term condition that can cause inflammation in the lungs, damaged lung tissue and a narrowing of the airways, making breathing difficult. There is no cure and its symptoms worsen over time. Palliative care aims to make patients feel comfortable when living with a long-term condition such as COPD. By managing symptoms and giving mental health support, it can reduce the number of hospital visits and improve quality of life for patients. Whilst this is important, many people living with COPD do not receive suitable care.
The EU PAL-COPD project aims to tackle this, through implementing the ICLEAR-EU intervention. This is a non-drug approach designed to improve the quality of life for people with advanced COPD by combining respiratory care with palliative care. ICLEAR-EU takes a holistic approach that addresses both physical discomfort and mental wellbeing. It also encourages better communication and informed decision-making between patients, families and healthcare providers about treatment options. By integrating palliative care earlier, this approach can reduce unnecessary hospitalisations, and help patients live more comfortably with the disease.
The consortium, which includes 13 partners across 7 European countries, has already laid the groundwork for the next phases of the project. From a successful kickoff meeting in Brussels to significant collaborative efforts across multiple nations, the project is on track to trial the approach in 18 hospitals across Europe, set to begin in 2025.
ELF co-leads many aspects of the EU PAL-COPD project through Lungs Europe, a partnership between the European Respiratory Society and ELF. ELF’s main role is to ensure that patients have a voice in the project through the EU PAL-COPD Patient Advisory Board. This group shares their experiences with COPD and provides researchers with insights into what matters most to people living with the condition.
Irene McGill, member of the EU PAL-COPD Patient Advisory Board and ELF COPD Patient Advisory Group, reflected on her involvement within the first year of the project.
“So far, we have attended 2 meetings with researchers where we could say what was important to us as COPD patients. I felt that our opinion mattered a lot, because in the early days of my career as a patient engagement specialist I learned to see when patients are not taken seriously. This is not the case here.”
By giving patients a platform to work alongside researchers and healthcare professionals, the project can remain relevant to patients within the real-world. It provides a beacon of hope for people like Irene and many others affected by advanced COPD.
“As we look at palliative care for COPD patients, I hope that we can integrate it as part of COPD treatment for those patients who need it. I hope this project will help them make the right choice if they want palliative care. There is so much uncertainty for people with this disease but making an informed decision about their treatment is something that every patient should have the right to do.”
The full interview with Irene is available to read in the EU PAL-COPD newsletter.
The success of the EU PAL-COPD project depends on the collaboration of healthcare professionals and patients. The project brings together experts in respiratory care, palliative care, psychology, health services, economics and more. With the involvement of patient organisations like ELF, the patient voice remains central throughout the process, ensuring that the needs and concerns of those living with COPD are addressed at every stage.
As the project moves forward, the EU PAL-COPD initiative promises to bring hope for people living with COPD and their families, ensuring that they receive the care they deserve.
Learn more about EU PAL-COPD and its next steps in the EU PAL-COPD newsletter.
Learn more about how we involve people with lung conditions in our activities.
