A Personalized, Home-Based, Multidisciplinary Outpatient Clinic for Managing Breathlessness in Chronic Obstructive Pulmonary Disease: Protocol for a Single-Arm, Mixed-Methods Cohort Study.

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 optimized treatment, nonpharmaceutical interventions deployed in a home-based breathlessness intervention service may reduce breathlessness to a manageable level.

OBJECTIVE

The aim of this study is to investigate whether patients with COPD experience reduced burden of chronic breathlessness and health care use following participation in the Macarthur Breathless Clinic (MBC), a multidisciplinary home-based health service intervention and to explore participant and carer experiences.

METHODS

The proposed research is a single-site, mixed methods, single-arm cohort study evaluating MBC. Eligible participants will have chronic breathlessness as defined by a modified Medical Research Council score of at least 2 and COPD confirmed by spirometry. Initially, participants will undergo a holistic medical assessment to understand factors contributing to breathlessness and to optimize therapy. The MBC intervention will be a 9-week, home-based, multidisciplinary program (with contributions from medical, nursing, physiotherapy, and occupational therapy clinicians). Central to this program will be coaching for breathlessness self-management using individualized, 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, 9 weeks, and 52 weeks; 12-month exacerbation rates, health care use, and rescue medication use will be monitored and measured against participants' historical data. Participant and carer experiences will be evaluated using qualitative methods to inform development of the service.

RESULTS

This project was funded in stages according to defined milestones, with the final milestone payment received in October 2025. Data collection commenced in March 2022. On submission of this manuscript, recruitment is complete with 92 participants having completed the protocol by March 2024. Data analysis is ongoing, and results are expected to be reported by early 2027.

CONCLUSIONS

This research protocol is the first to investigate long-term outcomes following a health service intervention targeting chronic breathlessness for patients with COPD. Positive results may see breathlessness strategies from MBC or other similar health service interventions incorporated into existing models of chronic COPD care.

TRIAL REGISTRATION: Australian and New Zealand Clinical Trial Registry ACTRN12620001330932; https://tinyurl.com/35fec8h4.

INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/85766.