https://orcid.org/0000-0001-9840-8626
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Abstract
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 using benralizumab (N = 8), dupilumab (N = 1), no biologicals (N = 1), and 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 treatment. They aim to regain their social life and societal participation, a contrast to those for whom biologicals prove ineffective. Biologicals’ burden of treatment is experienced as low and minor side-effects are mentioned by three respondents. Respondents appear relatively unconcerned about the lack of knowledge concerning the long-term effects 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.
Acknowledgements
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.
Declaration of interest
The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.
Notes
2 Benralizumab is administered using a syringe, once every 8 weeks, with a loading dose in week 4, about 8-6x times a year – a much smaller frequency than the daily medication patients with severe asthma are accustomed to. Tests by, amongst others, the pharmaceutical company show it to be a rather successful add-on treatment; 74% of patients report no exacerbations of severe asthma in their second year of taking it. Overall, biologicals’ greatest clinical benefit lies in reducing severe asthma exacerbations, with modest effects on day-to-day symptoms and quality of life (1), thus diminishing the need for the use of oral corticosteroids, and prednisone, of which side-effects are relatively strong both physically (osteoporosis, cataract, blood pressure drops) and mentally (anxiety, irritability, depression).
3 All quotes are translated from Dutch by the first author and edited for readability.