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"The Will to Live!" The Perceptions of Patients with Idiopathic Pulmonary Fibrosis in Relation to Antifibrotic Treatment: A Qualitative Study

Liliane Neto Generoso1, Marcella Guimarães Assis2, Paula Lages Barsand de Leucas3, Maria Bernardes Luz3, Mariana Parreira Moura3, Marcos Lucas Mateus Silva3, Eliane Viana Mancuzo

Introduction: Patients with Idiopathic Pulmonary Fibrosis (IPF) are typically treated with antifibrotic drugs, which act by slowing the progression of the disease, thus reducing the frequency of exacerbations and increasing survival. Although safe, such drugs have adverse effects and do not reduce the degree of dyspnoea or improve patient quality of life. In this study, we discuss the perceptions of individuals with IPF in relation to antifibrotic treatment.

Methods: This was a qualitative study of 17 patients with IPF on antifibrotic treatment for ≥ 6 months, followed at a referral centre for interstitial diseases. We collected data through semi-structured interviews and the six phases of thematic analysis was used.

Results: The results obtained allowed us to construct three thematic categories: the will to live; perceptions about improvement, delayed progression or worsening of the clinical condition resulting from the treatment; and perceptions about adverse effects of the treatment and their repercussions on daily life. The desire to stay alive or to reduce physical suffering was understood as a motivation to seek treatment. Some patients reported improvement in their clinical condition after starting antifibrotic. Tolerance to adverse effects was high among the participants, and even those who experienced significant drug-related adverse effects did not discontinue the treatment.

Conclusion: The will to live appears to motivate patients to use antifibrotics, even without the promise of a cure or changes in clinical status. In addition, adverse events, even when aggressive, do not seem to deter patients with a devastating disease from continuing treatment.