EXIST-COPD: Enhancing existential care for COPD patients and their families

1-2025 to 12-2028

Chronic obstructive pulmonary disease (COPD) is the third leading global cause of death, significantly impacting the quality of life of both patients and their family carers in the end stages. 

This underscores the crucial need for comprehensive palliative care, yet existing approaches predominantly focus on physical symptoms, neglecting existential needs despite documented suffering of both patients and carers. Research gaps are situated in two areas. 

1) Research in this domain has been largely qualitative, with large-scale, internationally comparative quantitative data of existential needs of patients and carers missing. 

2) No knowledge on interventions targeting existential needs of patients and carers exists. 

Our proposal addresses both gaps. 

First, we will measure the existential needs of patients and carers, as well as their relation to quality of life, through a large-scale international study across 6 countries (WP1). 

Second, we will add existential components to a novel palliative care intervention and evaluate their effect on existential needs in a stepped wedge RCT (WP2). 

Collaboration with the European project 'EU PAL-COPD' will facilitate data collection and intervention implementation. This will create the first quantitative insights into existential needs of advanced COPD patients and family carers, as well as knowledge on the working components of a potentially beneficial intervention, improving palliative care for COPD patients and carers as a whole.