Co-designing a Core Outcome Set for and with patients with Pulmonary Fibrosis (COCOS-IPF project): a joint patient-professional effort

Major progress has been made in view of diagnosis and drug treatment of idiopathic pulmonary fibrosis (IPF) and other forms of progressive pulmonary fibrosis (PPF), yet interdisciplinary holistic care for these rare and irreversible diseases is still in its infancy. Patient advocacy groups and experts from across Europe emphasize that gaps in care remain and that patients have major unmet care needs. It remains unclear which patient-reported and clinical outcomes patients and professionals deem most relevant to consider within routine care. The COCOS-IPF project is funded by the EJP-RD programme and aims to develop a Core Outcome Set (COS) and corresponding measures for routine care in Europe. The consortium has co-design at its core and consists of social scientists, European Patient Advocacy Organizations and ILD experts. The project has three work packages (WPs): WP1: To identify the range of outcomes used in pulmonary fibrosis-related research, registries or clinical care based on literature reviews, surveys and stakeholder involvement. WP2: To determine the key outcomes to be used in routine care based on a multi-stakeholder Delphi study and consensus meeting. WP3: To determine the measures of the COS based on literature review, consensus meetings and patient input. <b>Conclusion:</b> The strengths of the project are its interdisciplinary and transnational collaboration, its collaboration with patients as research partners and its sound methodological underpinning. By paying attention to geographical, socio-economic, and healthcare system diversity within Europe, we will create a set of outcomes that patients value most within their care.