Quality of life and end of life care of patients with idiopathic pulmonary fibrosis in Finland

Idiopathic pulmonary fibrosis (IPF) is a progressive, chronic disease of unknown cause. IPF patients exhibit a high symptom burden that influences their health-related quality of life (HRQOL). Its variable disease trajectory is comparable to that of many malignant disorders. The primary aim of the study was to evaluate IPF patients’ symptom burden and HRQOL from the perspective of approaching death and their end-of-life (EOL) care. The secondary aim was to identify possible predictors for escalating disease trajectory and palliative care need. Patients were identified from the FinnishIPF registry. First, we focused on 59 deceased IPF patients by reviewing their medical records and death certificates. The second and third studies focused on HRQOL and symptoms using survey methodology, namely the Modified Edmonton Symptom Assessment Scale (ESAS) and the Modified Medical Research Council Dyspnea Scale (MMRC) for symptom assessment and the RAND 36-Item Health Survey for HRQOL. In April 2015, we sent HRQOL and symptom questionnaires to 300 patients in the FinnishIPF registry, and the 82% who were willing to participate were included in our study population. Follow-up questionnaires were sent every six months. The hospital was found to be the most common place of death; thus, patients received aggressive care until the end. EOL decisions were made late (42% of decisions were made