Pulmonary fibrosis (PF) is a serious lung disease that causes scarring of the lungs. This scarring makes it harder to breathe and can affect many aspects of daily life, including energy, physical activity, emotional wellbeing and the ability to do things you enjoy. PF includes idiopathic pulmonary fibrosis (IPF) and other forms of progressive pulmonary fibrosis (PPF). The disease can vary from person to person, making personalised care very important.
The COCOS-IPF project was set up to improve care for people living with PF across Europe. Its goal was to find out what key outcomes — the things patients, carers, doctors and nurses consider important — should be measured and discussed in every patient’s care.
COCOS-IPF brought together patients, carers and healthcare professionals from across Europe to develop a standard list of key outcomes that everyone agrees should be assessed and monitored in all patients with PF. This list is known as a core outcome set (COS). Having a COS helps make care more consistent and focused on what matters most to patients.
To create this list, researchers first gathered information by reviewing existing studies, asking healthcare professionals for their views and holding focus group discussions led by patients to come up with a list of possible outcomes. More than 100 people, including patients, carers, doctors, nurses and other professionals, then took part in an online survey to rate how important each outcome was.
This process happened over three rounds so that everyone had a chance to share their opinions and reach agreement. Finally, a workshop was held with all the different groups to discuss the remaining outcomes and agree on the final list of 17 core outcomes.
The project identified 17 key outcomes that should form part of routine care for people with IPF or PPF.
Patients played an important role throughout this study. Around 1 in 3 of all participants were patients or carers. Working closely together with patients and carers ensured that the outcomes they valued most were included in the final COS.
The infographic will be published in new languages soon.
The COCOS-IPF outcomes help make care more consistent, person-centred and focused on what patients value most. They provide a clear framework for patients to talk about their health and priorities with their healthcare team, while helping clinicians focus on what matters in care and research.
They also guide researchers to measure outcomes that reflect real-life experiences, ensuring that studies are meaningful to people living with PF.
By using the COCOS-IPF Core Outcome Set, healthcare teams, researchers and patient organisations across Europe can work together to improve quality of life, personalisation of care and overall outcomes for people living with pulmonary fibrosis.
