Patients and Healthcare Providers’ Experiences and Expectations in Chronic Obstructive Pulmonary Disease Exacerbation Management and Remote Patient Monitoring: Initiating Co-Creation (Preprint)
Authors: Mahboubian Atena , Aardoom Jiska Joelle , Basic Enna , Kasteleyn Marise Jeannine , Chavannes Niels Hendrik 
Published: October 2024

BACKGROUND

Chronic Obstructive Pulmonary Disease (COPD) exacerbations worsen lung function and cause psychological distress, affecting overall health and quality of life (QoL). Early diagnosis and prevention of exacerbations are crucial for preserving lung function, improving QoL, preventing hospitalizations, and reducing mortality and healthcare costs. While remote patient monitoring (RPM) offers the potential for early exacerbation detection, challenges remain in recognizing symptoms early. A non-invasive breathalyzer is being developed to monitor COPD patients and detect exacerbations before symptoms arise. This study encompasses the initial co-creation phase to align the breathalyzer and corresponding care process with current COPD exacerbation management and user needs.

OBJECTIVE

This study aims to understand COPD care processes, exacerbation management, and RPM in the Netherlands, through three objectives: 1) Explore stakeholders involved in COPD exacerbation care, 2) Understand current COPD care, and 3) Assess stakeholder experiences and expectations regarding RPM in COPD care.

METHODS

Following the CeHRes roadmap, four research activities were conducted between March and September 2024 for the initial co-creation phase: 1) desk research, 2) interviews, 3) project group meeting, and 4) co-analysis focus group. Desk research involved reviewing literature and COPD (exacerbation) care guidelines. Semi-structured interviews (n=34) were conducted with 18 patients, 14 healthcare professionals, one caregiver, and one hospital policy advisor. Topics included COPD diagnosis processes, exacerbation management, stakeholder roles in COPD (exacerbation) care, and RPM experiences or expectations. The project group meeting between interviews and the focus group verified interim findings and guided the focus group content. Six patients participated in a co-analysis focus group to review interview quotes on exacerbations and RPM. The Framework Method was used to analyze the interviews and the focus group through inductive and deductive coding.

RESULTS

Objective 1 identified seven key stakeholders in COPD care, patients, pulmonologists, general practitioners, nurse practitioners, nurse specialists, physiotherapists, and informal caregivers. Objective 2 found a lack of uniformity in COPD care, exacerbation management, and information provision across providers. Patients reported struggling to recognize exacerbations. Regarding objective 3, although patients with experience in RPM generally reported positive experiences, they questioned the added value in early detection of exacerbations. Those without RPM experience were receptive to its use for symptom tracking but were concerned about reduced in-person care and overreliance on data. Healthcare providers reported seeing value in RPM for monitoring between visits and efficiently allocating resources but stressed the need for clear guidelines and noted barriers such as language proficiency and usability of technology.

CONCLUSIONS

This study highlights opportunities to improve COPD exacerbation management by optimizing effective and efficient RPM usage and integrating it into clinical practice. Future research should refine RPM processes, balance objective data with patient-reported symptoms, enhance communication amongst HCPs and between HCPs and patients, provide clear exacerbation management guidelines, and ensure inclusivity.