King’s College London: Patient survey reveals preference and economic cost of breathlessness services

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The paper is published today in Thorax by researchers from King’s. 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 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 assessed their economic impact.

Researchers surveyed 190 patients and 68 carers across the UK to determine their preferences. They found that patients preferred breathlessness supportive services within hospital outpatient clinics or within their own home. Their least preferred option was attending their local GP, as patients worried about the risk of contracting infections. 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 patient’s holistic needs improves quality of life and reduces health and social care costs. Modelling found health care savings could be between £663 and £5086 per person without increasing unpaid care provided by family members and those close to patients.

Combining patient choice, preferences and economic modelling further 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 also 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, 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.”