Title: OPTimizing cost-effective support for older patients with refractory BREATHlessness and their carers: An economic modelling evaluation incorporating preferences through Discrete Choice Experiment (OPTBreathe)
Funder: Department of Health and Social Care

Abstract: Why is this important? Breathlessness is a common symptom affecting over 95% of people with non-cancer lung disease and 50-70% of those with cancer. Most people affected are in older age groups. Despite all the causes for breathlessness being treated, breathlessness often persists. Such &ldquo;refractory&rdquo; breathlessness is frightening, provokes panic, impairs quality of life and often results in emergency hospital attendance or admission. In response, supported by NIHR RfPB, we developed and trialled a new Breathlessness Support Service (BSS) for patients with advanced conditions and refractory breathlessness. A randomized parallel group, pragmatic, single-blind fast-track trial of the BSS, found that BSS improved the breathlessness mastery. However, BSS is not a standard in NHS. Commissioners have expressed their interest in developing the BSS further and supporting it. But they need more information on the economic benefits, and whether it could be offered from GP surgeries. Research objectives We explore which aspects (attributes) of BSS are valued most; whether or not BSS is well accepted by patients with breathlessness and their families; and whether BSS is cost effective beyond trial from an NHS and/or a societal perspective. We suggest the optimized cost-effective and acceptable package for patients and NHS. Methods Questionnaire survey of patients and their carer, using a discrete choice experiment (DCE) to elicit preference for BSS Economic evaluation of BSS using a Markov model with existing trial data and epidemiological data Synthesis of results from DCE into the modelling analysis We use a DCE: an emerging health economic method which elicits preferences. Then we build a Markov cohort model for Monte Carlo simulations to obtain cost-effectiveness of the BSS beyond the trial using quality adjusted life years (QALYs) and CRQ mastery. Participants Patients 1) who are 65 or older; and 2) have medical diagnosis of chronic obstructive pulmonary disease (COPD), lung cancer or Interstitial lung disease (ILD); and 3) have breathlessness that is refractory to optimal medical management in the view of the treating clinician with a severity that is level 2 and above on the MRC dyspnoea scale. Family member/friend/lay carer who is designated as the closest family member or caregiver to the participating patient. Exclusion criteria are: 1) patients with breathlessness of unknown cause and chronic hyperventilation syndrome; or 2) those without capacity to fully comprehend and retain information about the study; or 3) those unable to be able to engage in an interview. Setting King s College Hospital, Guy s Hospital, GP surgeries in South London Results and outputs DCE: 1) absolute and relative importance of attributes and levels of BSS, 2) willingness to wait or willingness to pay for attributes and levels of BSS, and 3) probabilities of uptake of varying packages of BSS Cost-effectiveness of varying BSS: 1) incremental cost per QALY, 2) incremental cost per CRQ mastery, 3) cost-effectiveness acceptability curve. Comparison of cost effectiveness of BSS from 1) an NHS perspective and 2) a societal perspective To investigate the importance of informal care provided by families and friends, we take a societal perspective by allowing carers' costs and benefits in the analysis, in addition to the analysis with an NHS perspective. Impact We present the package of BSSs which are most valued by patients and families and most cost effective. BSS trial found retention rate of patients was higher than the NHS pulmonary rehabilitation services which has established cost-effectiveness. Interventions which incorporate service user s preference will enhance uptake and retention rate, leading to greater benefits to patients and efficiency in NHS resource allocation. This study helps patients with refractory breathlessness by enabling commissioners to make evidence based decisions on BSS.

Lay abstract: Breathlessness is a common symptom affecting over 95% of people with non-cancer lung disease and 50-70% of those with cancer, most being in older age groups. Despite all the causes for breathlessness being treated, breathlessness often persists. Such &ldquo;refractory&rdquo; breathlessness is frightening, provokes panic, impairs quality of life and often results in emergency hospital attendance or admission. Based on research with people affected by breathlessness, we developed a Breathlessness Support Service (BSS). This new short term service for patients and their families helps at an earlier stage than usual, bringing together palliative care and respiratory medicine. It included two outpatient visits and a home visit. A randomized controlled trial, supported by the National Institute for Health Research, found that BSS improved quality and length of life. Care costs did not increase. In parallel a similar breathlessness service was developed in Cambridge, which had similar benefits, with more home visits and no respiratory input. NHS commissioners are interested in BSS, but want to know more: what components are most valued by patients, whether clinics would be acceptable from GP surgeries, and its broader economic impact. Therefore, we use an economic research method combined with modelling. We ask 120 patients and where possible their families or caregivers to choose between attributes of BSS, indicating which are most important for them. Then we use this information in an economic model, adding cost estimates to the different ways of providing BSS (e.g. hospital outpatients, a GP surgery, at home) and what might be the savings for the NHS. The study integrates at all stages guidance from people severely affected by breathlessness, and from NHS commissioners and health professionals. It provides vital information on the optimal ways to support people with breathlessness and the economic implications for NHS Commissioning Groups and funders.

Research activity codes: 8.2 HEALTH AND WELFARE ECONOMICS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: CANCER AND NEOPLASMS;RESPIRATORY