Prevalence and severity of symptoms and concerns in patients with pulmonary fibrosis during their final year of life: a cohort analysis.

Background: Optimizing quality of life is the main goal for all patients with Pulmonary Fibrosis (PF). Healthcare professionals need a comprehensive, multidimensional Patient Reported Outcome Measure (PROM) tailored to patients with PF, to guide multidimensional symptom management and enhance quality of life. This study identifies symptom, which includes symptom prevalence, symptom severity, and clinically relevant symptoms and concerns, as a first step towards the development of a PF-specific, multidimensional PROM.

Methods: A cohort study was conducted based on completed King's Brief Interstitial Lung Disease questionnaire, collected from deceased patients with PF at a referral center. Symptom prevalence, patient concerns and symptom severity were analyzed descriptively.

Results: In total, 180 patients were included, 79% male and median age was 74. Symptoms regarding activity-related dyspnea were most prevalent and severe. Notably, >50% reported anxiety, worries, concerns, and thoughts about the end of life. In addition, 85% of patients reported a low sense of control over the illness. Less common or severe symptoms were related to chest tightness/wheezing and concerns regarding financial burden.

Conclusion/discussion: Most prevalent and severe symptoms and concerns were activity-related dyspnea, anxiety, worries, and end-of-life thoughts. When developing a PROM, it should include these symptoms and concerns. Questions concerning dyspnea during rest or activity, and the feeling of control over their disease should be considered, next to general questions about well-being and value of life.