The study, “Patient expectations, experiences and satisfaction with nintedanib and pirfenidone in idiopathic pulmonary fibrosis: a quantitative study,” was published in the journal Respiratory Research.
At present, two antifibrotic therapies have been approved for treating IPF: Ofev (by Boehringer Ingelheim) and Esbriet (by Genentech). These medications can slow disease progression and may reduce the rate of acute exacerbations.
Although the effectiveness and safety profile of these medications is fairly well-studied, little is known about the expectations and experiences of people who are treated with the antifibrotic therapies.
A team led by researchers at the Erasmus Medical Center, in the Netherlands, evaluated the expectations and experiences of people with IPF using data from a home monitoring clinical trial (NCT03420235) that enrolled 90 IPF patients who were beginning treatment with either Ofev (43% of participants) or Esbriet (57% of participants).
Expectations and experiences were evaluated using the patient experiences and satisfaction with medication (PESaM) questionnaire, a standard measure for this purpose. In this questionnaire, satisfaction is rated on a scale from -5 (very dissatisfied) to 5 (very satisfied).
Participants completed the PESaM just before beginning treatment (expressing expectations) and after three and six months of treatment (reporting experiences). Not all participants provided usable data at every time point.
“Many patients chose the answer option “don’t know” for questions in the expectation module,” the researchers wrote. “Hence, expectations and experiences could only be compared in a relatively small number of patients.”
From the available data, expectations regarding efficacy and side effects were generally positive, with mean scores of 2.8 and 2.5, respectively.
After six months, experiences of efficacy were still generally positive, but the average score was significantly lower than the expectation (2 vs. 2.8). Experiences with side effects were not significantly different for experiences and expectations.
“Overall, expectations regarding effectiveness were slightly higher than consecutive experiences, which emphasizes the need for realistic patient education and expectation management during the disease course,” the researchers wrote.
There were no significant differences in expectations or experiences between participants treated with Ofev and Esbriet.
Furthermore, the number and severity of reported side effects was similar for both medications. The most commonly reported side effects of Ofev were diarrhea (70.3%), fatigue (56.8%), and abdominal pain (45.9%). The most commonly reported side effects of Esbriet were fatigue (68.3%), skin-related events (58.5%), and decreased appetite (53.7%).
In general, people who reported more satisfaction with their medication also reported better health-related quality of life.
In statistical models, the only analyzed factor that was significantly associated with treatment satisfaction was the perceived effectiveness of the medication.
Overall, “patient experiences and satisfaction after three and six months of antifibrotic treatment were fairly positive, and similar in nintedanib and pirfenidone,” the researchers wrote.
“Experiences and satisfaction with ease of use were very high in both groups, showing that patients considered it relatively easy to integrate the use of antifibrotic medication in their daily life,” they added.
After six months of treatment, participants rated how important they considered the effectiveness, side effects, and ease of use of their medication. Effectiveness was rated as significantly more important (mean score of 3.5) than side effects (score of 2.2) or ease of use (score of 1.8).
“Our results highlight the importance of shared-decision making, taking into account patients’ expectations, experiences and preferences in all treatment decisions, as patients’ opinions and considerations may be different than healthcare providers assume,” the researchers wrote.
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