重症:无与伦比的响应经验

S. Lang
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引用次数: 0

摘要

背景:关于患者对生物治疗如何影响其生活的看法的信息有限。我们进行了一项定性研究,从生活质量的角度探讨患者被认为是超级反应者的经历。方法:被确定为超级反应的严重哮喘患者被邀请参加在线进行的半结构化访谈。参加者可带一名家人或朋友参加面试。访谈探讨了生物治疗的经验,并进行了转录和专题分析。结果:25名参与者参加了本研究。关于生物治疗对参与者及其朋友/家人的影响的主题出现了:(i)用来描述他们经常改变生活的经历的词语和(ii)注意到的积极变化。生物治疗停止了病情加重对家庭生活和社会生活造成的破坏。还注意到心理健康的改善。在影响他们生活的方式上有显著的个体差异。大多数参与者在开始服用生物制剂后2-3个月就注意到了改善,但有些人在几天内就注意到了改善,有些人在6个月后才注意到改善。结论:超应答者报告了生物治疗后哮喘症状和恶化的深刻但异质性的改善,包括对社会和家庭生活的重要益处。改善可能被低估,因为目前的研究没有可靠地衡量社会和家庭效益,这对健康经济评估有影响。并非所有患者都是超级应答者,在试验的组平均数据中可能会丢失出色的应答。个体时间过程和反应模式需要进一步阐明,以确定谁将对生物制剂反应最好。
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Schweres Asthma: Lebensverändernde Erfahrungen von Super-Respondern auf Biologika
Background: There is limited information on the patient’s perspective of how biologic treatments impact their lives. We conducted a qualitative study to explore the patient’s experience of being considered a super-responder from a quality of life perspective. Methods: Patients with severe asthma identified as super-responders were invited to semi-structured interviews conducted online. Participants could bring a family member/friend to the interview. The interviews explored experiences of biologic treatment, were transcribed and underwent thematic analysis. Results: Twenty-five participants took part in this study. Themes emerged on the impact of biologic treatment for participants and for their friends/family: (i) Words used to describe their often life-changing experiences and (ii) the positive changes noted. Biologic treatment stopped the disruption of family life and social life caused by exacerbations. Improvements in mental health were also noted. Marked individual variations in the way it affected their lives were noted. Most participants noticed improvements 2–3 months after starting their biologic, but some noticed improvement within a few days and others after 6 months. Conclusion: Super-responders reported profound but heterogeneous improvements following biologic treatment beyond asthma symptoms and exacerbations including important benefits to social and family life. Improvements may be underestimated as social and family benefits are not reliably measured in current studies with implications for health economic evaluations. Not all patients are super-responders, and excellent responses may be lost in group mean data in trials. Individual time course and response patterns need further elucidation to identify who will respond best to biologics.
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