RAND Europe Project: Living with Breathlessness



Chronic obstructive pulmonary disease (COPD) is a chronic progressive condition with high symptom- and carer-burden. It accounts for one death every 20 minutes in England and Wales.

National strategy documents state that quality end-of-life care should be available to patients with any condition, yet at present we rely on planning tools developed for cancer, which we know has quite a different trajectory.


The research study "Living with Breathlessness", being undertaken in collaboration with researchers at the University of Cambridge, aims to provide new evidence on the trajectory of health and social care needs and the preferences that patients with advanced COPD have for different models of care.

The ultimate aim is to move towards a new framework better suited to the end-of-life care for these patients; one which is based on a recognition of the slow relentless progression of non-malignant disease, its effect on patients and carers, and their stated care preferences.

Research Team

Peter Burge, principal investigator
Ellen Nolte
Dimitris Potoglou
Charlene Rohr
Eleanor Winpenny