Chronic Obstructive Pulmonary Disease (COPD) is a chronic, incurable, progressive, respiratory condition with a high symptom burden. The Living with Breathlessness study is a programme of work that seeks to provide new evidence on the trajectory of care needs and preferences of patients with COPD and their informal carers.

Using a novel flexible approach to data collection which combines longitudinal methods, mixed methods, and multiple perspectives, the study aims to capture care needs as experienced by patients and informal carers over time, and the clinician-identified barriers and facilitators to meeting needs. This new evidence will better our understanding of how patients’ and their informal carers’ needs and preferences change over time and how they can be better met.

Running across the East of England and South London until 2015, the study has an overall recruitment target of 500 patients with COPD.

Funded by Marie Curie and the National Institute for Health Research (NIHR), and supported by the Primary Care Research Network (PCRN) and service users, the study’s multidisciplinary team include respiratory and palliative care clinicians, as well as primary care health professionals, NHS managers and academic researchers.

 

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