18 Aug 2022

The new evidence is published in the journal Thorax and was produced by a team including palliative care and health economics researchers based at King’s College London, and specialist clinicians and physiotherapists at King’s College Hospital NHS Foundation Trust.  

Helping people to manage severe breathlessness 

Health conditions such as cancer, lung and heart disease can cause severe breathlessness, where breathing is consistently difficult and uncomfortable. Breathlessness is very distressing and is difficult to manage for patients and carers, often leading to hospital emergency department visits.

Breathlessness services combining respiratory and palliative care can help people to manage their breathlessness and reduce distress, anxiety and depression. However, these services are offered in several ways, including from GP surgeries, hospital-based outpatient clinics or directly in people’s homes. Although these services have been proved to be effective, no studies have previously assessed their economic impact.

Understanding patient preferences and the economic costs of support services  

The ARC researchers surveyed 190 patients and 68 carers across the UK to determine their preferences on how breathlessness supportive services are offered.

They found that patients preferred services offered within hospital outpatient clinics or at their own home. Their least preferred option was attending their local GP, as patients worried about the risk of contracting infections, such as Covid-19. They also did not see GPs as breathlessness experts. Patients preferred services that offered a review of their medication to manage breathlessness as well as non-drug self-management interventions, with support from physiotherapists, occupational therapists and social workers.

The research found providing breathlessness services that meet patients’ holistic needs improves quality of life and reduces health and social care costs. Modelling found health care savings could be between £663 and £5,086 per person, without increasing unpaid care provided by family members and those close to patients.

Combining patient choice, preferences and economic modelling enhances the evidence to support the need for breathlessness support services for those living with chronic breathlessness due to advanced disease. I sincerely hope that our data will support the provision of and improved access to breathlessness support services

Dr Charles Reilly, NIHR clinical lecturer and consultant physiotherapist at King's College Hospital

The impact of the Covid-19 pandemic was starkly felt in the research, as patients worried about attending GP surgeries and hospitals in fear of contracting Covid-19.

Professor Irene Higginson, senior investigator from the Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, and the ARC’s lead for palliative and end of life care research, said: “Breathlessness can have a terrible impact on people’s lives, physically, emotionally and socially. The encouraging thing about this study is that we find breathlessness services, which include a tailored suite of self-management approaches, can improve people’s lives, and at the same time cost slightly less to health care." 

We now need to look into ways to offer breathlessness services more widely. With more and more people living with chronic breathlessness as a consequence of the Covid-19 pandemic and other conditions, there is an urgent need for breathlessness support services

Professor Irene Higginson, the ARC’s lead for palliative and end of life care research