Title: An evidence synthesis of holistic services for refractory breathlessness in advanced malignant and non-malignant disease
Funder: Department of Health and Social Care

Abstract: Background: Breathlessness is a common, distressing symptom which affects over 2 million people in the UK every year. It increases as disease progresses and often becomes refractory, i.e. not responsive to treatment aimed at the underlying disease. It is frightening for patients and families, and results in reduced life expectancy and high NHS costs. There are few effective treatments for refractory breathlessness so services that combine treatments are required. Pulmonary and cardiac rehabilitation provide exercise-based approaches to help manage breathlessness, but their reach is limited, particularly to those with the most advanced disease who become socially isolated and ‘invisible’. Holistic breathlessness services provide pharmacological and non-pharmacological treatments to patients and caregivers, across settings, using multidisciplinary approaches. They emphasise self-management, and target improvements in quality of life by reducing the impact of breathlessness and related symptoms on everyday living. Literature scoping has identified a body of primary research related to these services, including RCTs, but this evidence must be synthesised and understood as a whole to inform NHS policy and practice. Aim and objectives: We aim to provide a comprehensive evidence synthesis of holistic breathlessness services for people with advanced malignant and non-malignant conditions. Our objectives are to describe the structure, organisation and delivery of services; determine their effectiveness for improving symptom burden and quality of life, cost effectiveness from a patient, societal and NHS perspective, and acceptability to health care professions and patients. Further objectives are to identify predictors of treatment response, and produce clinical recommendations for policy, commissioning, and practice related to holistic breathlessness services, including their role in relation existing rehabilitation services. Methods: A systematic review, individual patient data analysis, and expert consultation. The systematic review will adopt an extensive search strategy, pool data using meta-analysis where possible, and appraise individual studies and overall quality of evidence. Individual patient data pooled from three RCTs with comparable outcome measures will be used to investigate predictors of treatment response. A transparent expert consultation will identify clinical recommendations and priorities via a workshop, nominal group technique and consensus survey involving key stakeholders. Impact: We will produce a range of outputs of value to the NHS, the public and the research community including (1) a published synthesis of evidence on breathlessness services; (2) knowledge of which patients are most likely to benefit, and which types of services are most effective, and (3) clinical practice and research recommendations for refractory breathlessness as judged by key stakeholders. This work will help patients with refractory breathlessness and the NHS by enabling commissioners and clinicians to make evidence based decisions on holistic breathlessness services. If effective, breathlessness services could benefit the large and growing number of people with chronic breathlessness, and their families, by reducing distress and suffering. This may subsequently reduce demand on NHS services, especially unplanned hospital admission via emergency department presentation.

Lay abstract: Breathlessness affects over 2 million people in the UK every year. People with advanced stages of disease often experience shortness of breath, or breathlessness, which is present even when they are resting or performing very light everyday activities such as moving around the home. It is frightening for patients and families, causing a lot of anxiety and panic. Severe breathlessness that does not settle, or comes on unexpectedly, is often the reason for people calling an ambulance or going to the emergency department. Breathlessness is hard to treat. There are few effective drug treatments, and non-drug treatments are preferred. These include finding comfortable positions, using fans to cool down, or pacing activities. Some people find exercise programmes helpful, but for many others these are too difficult to get to, or are too much of a commitment to take on. Breathlessness services that offer a range of treatments to manage the symptom in each person in an individual manner are known as “holistic” services. These can involve staff from palliative care, physiotherapy, occupational therapy, and respiratory medicine. They encourage people and their family members to self-manage by teaching them ways to cope with breathlessness, to feel less distressed, and to be more in control. In this project we will provide a detailed review of holistic breathlessness services. We aim to find out firstly, how acceptable they are to the people accessing them and other health professionals, secondly, how effective they are at improving the burden of breathlessness and other symptoms to improve quality of life, and thirdly, if they offer good value for money. We will also find out which people are most likely to benefit from these services and if certain types of service are more effective, e.g. those offered at home as compared to in a community practice. We will invite NHS patients, managers, and health care professionals involved in caring for people who are breathless to review the findings. Together, we will make recommendations to help policy makers, commissioners, and health care professionals make informed decisions about the value and use of holistic breathlessness services in the NHS. These services may reduce distress and suffering among the large and growing number of people with advanced disease who are breathless. By helping people manage their breathlessness better at home, they may also help avoid visits to the emergency department.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: RESPIRATORY