OBJECTIVES: Idiopathic pulmonary fibrosis (IPF) is a progressive and fatal lung disease associated with dyspnoea, cough and impaired quality of life (QoL). Our aim was to estimate the QoL of IPF patients according to forced vital capacity (FVC) % predicted and its variation according to FVC decline over 12 months.

METHODS: Prospective, observational, multicentric study of patients with confirmed IPF. QoL was assessed through SGRQ, EQ-5D-5L questionnaires and the Barthel Index.

RESULTS: 204 consecutive patients with IPF were included: 77% male, average age (SD) 70.8 (7.6) years. The mean (SD) overall SGRQ score was 35.06 (18.23) at T0, being 0 (fewest limitations) to 100 (most), with statistically significant differences between FVC predicted groups (p=0.0020). At T12, patients with FVC<50% had statistically significantly more limitations by means of overall SGRQ score than FVC>80% patients (p=0.0233).

Regarding EQ-5D-5L, the mean (SD) index value was 0.78 (0.22) at T0, ranging from -0.654 (worse QoL) to 1.000 (best), with statistically significant differences between FVC predicted groups (p=0.0054). The mean (SD) EQ-5D-5L – VAS (0-100) score was 68.05 (18.83) at T0 with statistically significant lower scores in the lower FVC% predicted group (p=0.0176).

The mean (SD) overall Barthel index score was 97.03 (7.90) at T0, being 100 an independent patient. Patients with FVC>80% were significantly more independent than patients with FVC<50% at T0 and T6 (p=0.0075 and p=0.0361, respectively).

Patients with higher FVC decline reported increased worsening of their QoL throughout the study (T0-T12) both for the mean global change in EQ-5D-5L (p=0.0747) and in the overall SGRQ scores (p=0.0733).

CONCLUSIONS: Patients with lower FVC% predicted had more limitations and worse QoL than patients with a less impaired lung function. Throughout the study, patients with a higher FVC decline reported a higher QoL loss. Slowing disease progression is relevant to preserve patients’ QoL and independence.