Abstract
BackgroundTwo 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.MethodsOutpatients 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).ResultsIn 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.ConclusionsPatient 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 registrationNCT03420235.
Highlights
IntroductionNintedanib and pirfenidone, are available for treatment of idiopathic pulmonary fibrosis (IPF)
Two antifibrotic drugs, nintedanib and pirfenidone, are available for treatment of idiopathic pulmonary fibrosis (IPF)
Eligible to participate were adults (> 18 years) with a diagnosis of IPF confirmed in a multidisciplinary team meeting, according to the ATS/ERS/JRS/ALAT guideline, who were about to start on antifibrotic treatment [1]
Summary
Nintedanib and pirfenidone, are available for treatment of idiopathic pulmonary fibrosis (IPF). Efficacy and adverse events have been well studied, little is known about patient experiences with these drugs. Nintedanib and pirfenidone, are available for treatment of IPF. These drugs slow down disease progression, may reduce the rate of acute exacerbations, and seem to prolong survival [2,3,4]. The prevalence of adverse events has been reported in randomized controlled trials and registries with real-world data In these studies, around 20–30% of patients permanently discontinued antifibrotic treatment due to adverse events, such as diarrhea or photosensitivity [7, 8]. Efficacy and adverse events have been well studied, little is known about patient experiences and satisfaction with antifibrotic medication. Gaining better insights in patient expectations before start of treatment could help to optimize expectation management and aid shared-decision making [14]
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