Macarthur Breathless Clinic - working together to defeat breathlessness in COPD: Protocol (Preprint)

BACKGROUND Breathlessness is a distressing symptom for people with chronic obstructive pulmonary disease (COPD), impacting independence and community participation, resulting in reduced quality of life. With optimised treatment, non-pharmaceutical interventions deployed in a home-based breathlessness intervention service may provide additional benefits, reducing breathlessness to a manageable level. OBJECTIVE The study investigates whether the Macarthur Breathless Clinic (MBC) reduces the burden of chronic breathlessness and healthcare utilisation in COPD patients. Participant and carer experiences will also be explored. METHODS The proposed research is a single-site, mixed-methods, single-arm cohort study evaluating MBC. Eligible participants will have COPD confirmed by spirometry and chronic breathlessness as defined by modified Medical Research Council (mMRC) score at least two. Initially, participants will undergo a holistic medical assessment to understand factors contributing to breathlessness and to optimise therapy. The MBC intervention will be a nine-week multi-disciplinary program (with contributions from medical, nursing, physiotherapy and occupational therapy); most clinical interactions will occur within participants’ homes. Central to this program will be coaching for breathlessness self-management utilising individualised, multicomponent strategies. Breathlessness impact will be assessed using questionnaire instruments measuring breathlessness mastery, symptom burden, quality of life and psychological distress, with the Chronic Respiratory Questionnaire’s mastery subscale, as primary outcome. Assessments will be undertaken at baseline, nine weeks and 12 months. Participant and carer experiences will be evaluated using qualitative methods to inform development of the service. Twelve-month exacerbation rates, healthcare and rescue medication use will be monitored and measured against participants’ historical data. RESULTS We hypothesize that the Macarthur Breathless Clinic (MBC) will reduce the impact of COPD-related chronic breathlessness (in terms of coping ability, symptom burden, quality of life and psychological distress), reduce COPD-related healthcare utilisation and provide a positive consumer experience. CONCLUSIONS The proposed study will be an important addition to the growing body of evidence about the use of non-pharmacological interventions for chronic refractory breathlessness in patients with non-malignant disease. If positive, our research has the potential to improve the burden conferred by chronic breathlessness for patients living with COPD, to decrease the weight of responsibility for their carers and to reduce potentially unnecessary hospitalisation, thereby contributing to improved health and economic outcomes. CLINICALTRIAL Australian and New Zealand Clinical Trial Registry (ANZCTR) ACTRN12620001330932 https://www.anzctr.org.au/