What is it about?
Idiopathic pulmonary fibrosis (IPF) is a lung disease that has no current cure and worse outcomes than most cancers. We used answers to a large quality of life survey from more than 240 people with IPF to determine which questions were the most important to the patients and which questions were able to identify people who were getting worse. Scores from just 11 questions were linked to how bad the disease was at the time, and how quickly the disease worsened.
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Why is it important?
Questions were not selected based on lobbied opinion, but on results offered from people with the disease, giving a patient-centred evidence-based approach to making a quality of life survey. This empowers patients to be involved in their own care and recognise their needs, and offers medical professionals more tools to help manage outcomes in such a progressive disease.
Perspectives
This is a valuable publication as it provides support to the importance of patient reported outcome measures, but also equips medical professionals with added evidence-based quality of life scores when worsening disease makes lung function tests hard. The score also paves the way for clinical trials for new IPF drugs to complete earlier, without needing to wait for participant mortality.
Iain Stewart
University of Nottingham
Read the Original
This page is a summary of: Patient reported distress can aid clinical decision making in idiopathic pulmonary fibrosis: analysis of the PROFILE cohort, European Respiratory Journal, March 2019, European Respiratory Society (ERS),
DOI: 10.1183/13993003.01925-2018.
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