This project addressed known deficits in healthcare related to the management of people with chronic lung disease who experience episodes of worsened symptoms (referred to as ‘flare-ups’). Effective recovery from these events does not happen spontaneously due to many factors including challenges of the skilled health workforce, competing priorities during flare-ups, poor patient health literacy, poor healthcare coordination from acute to primary care settings and the timing of interactions relative to individual needs.
To overcome many of these issues, this project sought to empower people with chronic lung disease with knowledge to expect evidence-based care from healthcare providers. Specific focus was placed on engagement with pulmonary rehabilitation after lung flares as this is particularly challenging but crucial treatment to address.
The research was multifaceted and involved the mixed-methods integration of perspectives from patients, carers, healthcare professionals and experts in the field following the core tenets of experience-based co-design to inform a custom designed web-based resource that is now freely available (www.lungflarecare.com) and shows promise as a clinically useful tool to aid in the delivery of high-quality care for people with acute respiratory exacerbations.
The final website underwent pilot real-world implementation and evaluation via tablet administration to 19 inpatients with acute exacerbations of COPD across a metropolitan hospital network (June-October 2022). Survey feedback (n=17) revealed 88% of inpatients found the resource useful and 82% reported an increased willingness to participate in pulmonary rehabilitation. Several patients remarked they gained new insights into their disease management: “There’s a lot of stuff in here. Things I thought were a waste of time aren’t…There’s a lot more I can do to help me than I knew”. Physiotherapists reported high levels of satisfaction with the resource and improved time and care efficiencies.
