Improving care and support for people living with breathlessness

Chronic Obstructive Pulmonary Disease (COPD) is a type of obstructive lung disease characterised by poor long-term airflow, which carries a high symptom burden, particularly increasing breathlessness. COPD is progressive, accounting for one death every 20 minutes in England and Wales.

National strategy documents from the UK state that quality end-of-life care should be available to patients with any condition. However, in practice people with advanced COPD usually rely on end-of-life planning tools and care pathways that have been developed for cancer, which has a different and more predictable patient journey.

With this in mind, the Living with Breathlessness study, funded by the National Institute for Health Research and Marie Curie, explored the question of how patients and carers’ needs change along the trajectory of advanced COPD and offered six recommendations for improving care and support (see box 1).


Box 1. The Living with Breathlessness study recommendations for improving care and support for people living with advanced Chronic Obstructive Pulmonary Disease

• Stop the continual focus on the challenge of prognosis and unpredictability of trajectories as barriers to meeting needs.
• Change targets to incentivise patient-centred care within existing services.
• Enable identification of and response to patient support needs (through evidence-based tools and approaches).
• Identify and support patients’ informal carers (through evidence-based tools and approaches).
• Identify and respond to psychological morbidity in patients and informal carers.
• Change societal attitudes to and understandings of COPD, breathlessness, palliative care and informal carer support.

However, these recommendations alone are not enough to improve care and support. For positive changes to happen, the recommendations need to be taken up through guidelines, policy, and practice. RAND Europe carried out an online survey of people who work with individuals with COPD to assess the levels of agreement with the recommendations, and views around their implementation.

We found that there is a significant level of support for these recommendations among healthcare practitioners and others working with people with COPD. The vast majority of respondents agreed that each of the recommendations would have the potential to improve quality of life for advanced COPD patients. However, they also expressed caution around the ease of implementation, with only around half indicating that this would be straightforward in most cases.

These concerns largely focused on the time and resources needed to implement these changes and, in particular, respond appropriately to any unmet patient and carer needs. There was also a notable dissatisfaction with ‘tick box’ or target-led approaches, with respondents flagging that care would need to be taken to ensure that any adopted recommendations do not just add another item to the list of targets that practitioners have to meet.

However, one practical point from the survey was that many respondents felt that they were already incorporating many aspects of these recommendations into their existing practices. This suggests that, although there may be some challenges in implementing these recommendations, they are not insurmountable.

Living with COPD puts a huge burden on patients and their informal caregivers. The Living with Breathlessness study has identified several practical recommendations which could improve care and support among these groups. The findings from our online survey will support the translation of these recommendations into practice.

morag_farquharMorag Farquhar is a senior research associate at the University of Cambridge and is funded by a National Institute for Health Research Career Development Fellowship and led the Living with Breathlessness Study*.




peter_burgePeter Burge is a research leader at RAND Europe.





katie_saundersKatie Saunders was involved with the research when she was Analyst at RAND Europe. She is now with the Cambridge Centre for Health Services Research, a collaboration between RAND Europe and the University of Cambridge.

*The Living with Breathlessness study is independent research supported by a Marie Curie research grant (C28845/A14129) and the National Institute for Health Research (Career Development Fellowship, CDF-2012-05-218). The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research, the Department of Health, Marie Curie or other funders.