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COPD affects 1 in 10 of all people aged 50 and over and is a leading cause of death. The disease is characterised by breathlessness, coughing and often excessive mucus production, all of which make any physical activity uncomfortable and difficult for sufferers. In Europe alone, some 300 000 Europeans die each year from COPD.
Physical inactivity is a key predictor of death in patients with COPD. The EU and industry-funded PROACTIVE project has developed new tools to help researchers and clinicians measure the impact of the disease on patients experience with physical activity and the physical difficulties patients encounter. This information can now be used to assess the impact of effective treatments on an outcome that is directly relevant to patients.
‘Lack of physical activity is an indicator of mortality,’ says project coordinator Thierry Troosters of the Katholieke Universiteit Leuven in Belgium. ‘Patients with COPD who drop their physical activity levels are more likely to die than people who maintain those levels. We could already measure physical activity, but now we have a tool that captures how patients experience it.’
The new tools are providing doctors, nurses and other healthcare workers and researchers with unique information on the effect of treatment on their patients, he adds. They will also feed into the way new medicines and other interventions are assessed and benchmarked, based on patients’ experiences.
A focus on patient experience
By combining wearable physical activity monitors with short daily surveys, researchers found an effective way to gauge symptom-related stress experienced when patients were active. Three different kinds of activity monitors were trialled to find the most sensitive ones, which are best suited for people with chronic diseases.
Input from patients was key to the development of the PROACTIVE tool. COPD sufferers themselves designed the user-friendly questions for the surveys and patient organisations were also given important managerial roles on the ethics committee board of the project.
‘We want to get insights from the patients’ perspective on how an intervention benefits them directly,’ says Troosters, explaining how normally treatment testing focuses on physiological results, but not patient experiences.
Another key result of the project was its success in highlighting the dangers of inactivity for people with COPD. Thanks to the project, clinicians are more aware of the importance of prioritising regular activity when discussing disease management plans with patients.
Tele-coaching spin-off app
To test how effective the tool would be in real-life, a tele-coaching smartphone app was developed as a ‘side product’. In a European multicentre study up to 140 COPD patients received regular instructions though the smartphone app. Information about patients’ activity levels was delivered directly to the coach, and he/she was able to provide the patients with support as needed. The team noticed a significant and clinically relevant improvement in physical activity.
The research showed that the PROACTIVE tool showed the effectiveness of this innovative intervention. For the first time, scientists had detailed access to information directly from the patient’s perspective.
The next steps, the researchers say, will be the further development of the PROACTIVE tool for patients with other diseases where lack of activity is also related to mortality.
‘We’ve now developed it for patients with COPD but of course there is also an interest to use the same principles in other diseases, for example pulmonary hypertension, cystic fibrosis, pulmonary fibrosis,’ says Troosters. ‘These are all diseases where we know that physical activity and the experience thereof is important in the perception of the burden of the disease in a patient.’
PROACTIVE received funding through the Innovative Medicines Initiative, a public-private partnership between the EU and industry.