de Graaff M B, Bendien S A, van de Bovenkamp H M
Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, the Netherlands.
Department of Pulmonology, Haga Teaching Hospital, The Hague, the Netherlands.
J Asthma. 2022 May;59(5):980-988. doi: 10.1080/02770903.2021.1888976. Epub 2021 Feb 24.
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. 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.
研究结果显示了我们的受访者如何经历疾病负担（呼吸急促、疲劳、病情加重、失去家人、朋友和工作）以及治疗负担（口服皮质类固醇的副作用、依赖性、生活方式改变）。生物制剂治疗对受访者来说相对较新。他们提到在接受生物制剂治疗时要谨慎，并对未来表达希望时也要谨慎。对生物制剂治疗有反应的受访者经历了疾病负担和治疗负担的减轻。他们的目标是恢复社交生活和社会参与，这与那些生物制剂治疗无效的受访者形成对比。三位受访者提到生物制剂的治疗负担较低且副作用较小。受访者似乎相对不担心对生物制剂长期影响缺乏了解的问题。在长期且复杂的重度哮喘生活过程中，生物制剂的有效治疗总体上被视为谨慎乐观的下一步。我们得出的实际经验教训指向管理患者的期望以及关注不符合生物制剂治疗条件的患者的必要性。
