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 (8), dupilumab (1), no biologicals (1), and two interviews with healthcare professionals (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’ Bburden 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.
Bibliographical noteFunding Information:
This study is financially supported by AstraZeneca BV, The Hague (D3250R00063, 22–05-2019). This study has been executed by researchers from Erasmus School of Health Policy & Management through an addendum to the existing agreement between the institute of Medical Technology Assessment (iMTA) and AstraZeneca. The agreement and addendum ensure, amongst others, the independence of the researchers in the design, execution and reporting of the results of this study. AstraZeneca provided assistance for the selection of participating hospitals and gave input on the manuscript, however the researchers remained fully independent in their decision to adopt or reject the input. We are thankful to the respondents for participating in this study and sharing their experiences with us and for the authors of the ego-documents for writing down their experiences. We thank Coleta Platenkamp for her help in the selection process of the patient narratives. We would also like to acknowledge the support of the physicians who aided us in recruiting our respondents and to thank Sean O’Quinn, Wendy Beekman-Hendriks, Michiel Ferns and Andrea Sellink for their comments on earlier versions of our findings. Bryan Bong provided language editing.
© 2021 The Author(s). Published with license by Taylor & Francis Group, LLC.