Patient-generated real-world data in severe asthma: Towards patient-centred care

In this dissertation, we examined outcomes that are important to people with severe asthma, such as fatigue, physical activity, quality of life. Across several studies, we investiaged how these outcomes change following treatments for severe asthma. In two studies, we evaluated fatigue, quality of life, work productivity, activity and weight in people starting medication (biologics), and how these outcomes developed after one or two years. In two other studies, we focused on fatigue and physical activity in relation to pulmonary rehabilitation at altitude. Although treatment with medication (biologics) and pulmonary rehabilitation programs lead to meaningful improvements for many, a substantial proportion of patients continue to experience a high disease burden. These findings highlight that patient-centred care in severe asthma goes beyond symptom control and lung function. It requires sustained attention to lived disease burden, comorbidities, and broader outcomes such as sleep, weight, and work. Only by adopting this broader approach can care truly align with the goals and needs of people living with severe asthma.