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

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