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Project

Co-designing a Core Outcome Set for and with patients with Idiopathic Pulmonary Fibrosis (COCOS-IPF)

Idiopathic pulmonary fibrosis (IPF) is a rare, progressive and irreversible form of interstitial lung disease of unknown etiology that primarily affects older people. Major progress has been made in view of earlier IPF diagnosis and drug treatment. Interdisciplinary holistic care in IPF, however, is still in its infancy. Patient advocacy groups and clinical IPF experts from across Europe stress that gaps in IPF care continue to exist and that patients with IPF have several unmet needs for which urgent action is needed. The key patient-reported and clinical outcomes that patients and professionals deem most relevant to consider within IPF care remain to be determined. This hampers improvement of care and the quality of life of people living with IPF, as well as IPF-related research. The “Co-designing a Core Outcome Set for and with patients with Idiopathic Pulmonary Fibrosis” (COCOS-IPF) project aims to develop a Core Outcome Set (COS) and their corresponding measures for IPF care in Europe. The consortium consists of social scientists, European patient Advocacy Organizations, and IPF experts and has co-design at its core. Five work packages (WPs) combine different well-established social sciences research methodologies:

WP 1: To identify the range and consistency of outcomes used in IPF-related research, registries or clinical care based on literature reviews and stakeholder involvement;

WP 2: To establish a COS for use in routine IPF care based on a multi-stakeholder Delphi study and a consensus meeting;

WP 3: To determine the measures of the core clinical and patient-reported outcomes based on literature reviews, consensus meetings and cognitive debriefings;

WP 4: Project management, data management and risk management;

WP 5: Dissemination to the scientific community, patients and society as a whole.

The strengths of the COCOS-IPF project are its interdisciplinary and transnational collaboration, its collaboration with patients as research partners and its sound methodological underpinning. Moreover, by paying attention to geographical, socio-economic and healthcare system diversity within Europe, we will succeed to create a set of outcomes that patients with IPF value the most within their care.

Date:1 Jun 2022 →  Today
Keywords:Idiopathic Pulmonary Fibrosis
Disciplines:Respiratory medicine, Psychometrics, Human-centred design