特发性肺纤维化患者对尼达尼布和吡非尼酮的期望、体验和满意度：一项定量研究。
Patient expectations, experiences and satisfaction with nintedanib and pirfenidone in idiopathic pulmonary fibrosis: a quantitative study.
机构信息
Department of Respiratory Medicine, Erasmus Medical Center, Dr. Molewaterplein 40, 3015, GD, Rotterdam, the Netherlands.
Department of Respiratory Medicine, Zuyderland Medical, Heerlen, the Netherlands.
出版信息
Respir Res. 2020 Jul 23;21(1):196. doi: 10.1186/s12931-020-01458-1.
BACKGROUND
Two antifibrotic drugs, nintedanib and pirfenidone, are available for treatment of idiopathic pulmonary fibrosis (IPF). Although efficacy and adverse events have been well studied, little is known about patient experiences with these drugs. We aimed to systematically and quantitatively evaluate patient expectations, experiences, and satisfaction with nintedanib and pirfenidone. Furthermore, we assessed which factors were associated with overall patient satisfaction with medication.
METHODS
Outpatients with IPF prospectively completed the Patient Experiences and Satisfaction with Medication (PESaM) questionnaire before start, and after three and 6 months of antifibrotic treatment, as part of a randomized eHealth trial (NCT03420235). The PESaM questionnaire consists of an expectation module, a validated generic module evaluating patient experiences and satisfaction concerning the effectiveness, side-effects, and ease of use of a medication, and a disease-specific module about IPF. Satisfaction was scored on a scale from - 5 (very dissatisfied) to + 5 (very satisfied).
RESULTS
In total, 90 patients were included, of whom 43% used nintedanib and 57% pirfenidone. After 6 months, the mean overall score for satisfaction with medication was 2.1 (SD 1.9). No differences were found in experiences and satisfaction with medication, and the number and severity of side-effects between nintedanib and pirfenidone. Perceived effectiveness of medication was rated as significantly more important than side-effects and ease of use (p = 0.001). Expectations of patients regarding effectiveness were higher than experiences after 6 months. Self-reported experience with effectiveness was the main factor associated with overall medication satisfaction.
CONCLUSIONS
Patient experiences and satisfaction with antifibrotic treatment were fairly positive, and similar for nintedanib and pirfenidone. Systematic evaluation of patient expectations, experiences, and satisfaction with medication could enhance shared-decision making and guide drug treatment decisions in the future.
TRIAL REGISTRATION
NCT03420235 .
背景
尼达尼布和吡非尼酮是两种抗纤维化药物，可用于治疗特发性肺纤维化（IPF）。虽然已经充分研究了这些药物的疗效和不良反应，但对于患者使用这些药物的体验知之甚少。我们旨在系统地和定量地评估患者对尼达尼布和吡非尼酮的期望、体验和满意度。此外，我们评估了哪些因素与患者对药物的总体满意度相关。
方法
作为一项随机电子健康试验（NCT03420235）的一部分，门诊 IPF 患者前瞻性地在开始前、抗纤维化治疗 3 个月和 6 个月后完成了患者体验和对药物的满意度（PESaM）问卷。PESaM 问卷包括一个期望模块、一个经过验证的通用模块，用于评估患者对药物有效性、副作用和易用性的体验和满意度，以及一个关于 IPF 的疾病特异性模块。满意度评分范围为-5（非常不满意）至+5（非常满意）。
结果
共纳入 90 例患者，其中 43%使用尼达尼布，57%使用吡非尼酮。6 个月后，药物治疗满意度的总体平均得分为 2.1（SD 1.9）。尼达尼布和吡非尼酮在药物体验和满意度方面以及副作用的数量和严重程度方面无差异。患者认为药物的有效性明显比副作用和易用性更重要（p=0.001）。与 6 个月后相比，患者对药物有效性的期望高于体验。自我报告的药物有效性体验是与总体药物满意度相关的主要因素。
结论
抗纤维化治疗的患者体验和满意度相当积极，且尼达尼布和吡非尼酮之间无差异。系统评估患者对药物的期望、体验和满意度可以增强共同决策，并指导未来的药物治疗决策。
试验注册
NCT03420235。
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