‘Like a fish on dry land’: an explorative qualitative study into severe asthma and the impact of biologicals on patients’ everyday life

Objective: In order to provide concrete context to research on biologicals for severe asthma we explore the everyday experiences of patients living with severe asthma and using biologicals.
Methods: We use a multi-method qualitative research-design including existing patient narratives, ten life-history interviews with patients mainly usingusing benralizumab (N = 8), dupilumab (N = 1), no biologicals (N = 1), and two interviews with healthcare professionals (N = 2) in the Netherlands. Our analysis focuses on patients’ experiences with the burden of disease and the burden of treatment regarding severe asthma.
Results: Findings show how our respondents experience a high burden of disease (breathlessness, fatigue, exacerbations, loss of family, friends and employment) and treatment (oral corticosteroids’ side-effects, dependency, life-style changes). Treatment with biologicals is relatively new for respondents. They mention to be cautious in their embrace of biologicals and in expressing hope for the future. Respondents who react to treatment with biologicals experience relief of both the burden of disease and and of treatment. They aim to regain their social life and societal participation, a striking contrast to those for whom biologicals proof prove ineffective. Biologicals’ burden of treatment is experienced as low and minor side-effects are mentioned by only few three respondents. Respondents appear relatively unconcerned about the lack of knowledge concerning the long-term effects and safety of biologicals.
Conclusions: Effective treatment with biologicals is generally experienced as a cautiously optimistic next step in a much longer and complex process of living with severe asthma. The practical lessons we draw point to managing patients’ expectations and the need to pay attention to patients not eligible for treatment with biologicals.