IPF: what to measure when measuring quality of life?

Swedish scientists reported findings from their national registry of idiopathic pulmonary fibrosis patients (IPF) that showed that Swedish IPF patients have a poor quality of life (QoL) and poor perception of their disease. This while most of them were affected by a mild or moderate form of IPF according to the forced vital capacity (FVC) value. Which raises an important question: is FVC actually the right thing to measure, when you want to measure QoL in IPF-patients?

Giovanni Ferrara and colleagues published a study in the European Clinical Respiratory Journal, in which they reported about the Swedish registry’s first year of implementation, from september 2014 to october 2015. Among other things, the report shows that web-based tools can rapidly be implemented and used to address important questions in healthcare at a national level. Patient IPF-characteristics in the national registry turned out to be similar to what has been reported in other registries and studies, with a median age of 70 at diagnosis, patients ranging from 47 to 86 years old and a high proportion of ex-smokers.

One of the more striking findings after one year of implementation was that while most patients in the registry had mild or moderate disease severity, they nonetheless reported a low quality of life. The qualification 'mild or moderate' is determined by measuring the FVC-value. According to the researchers, this finding supports an ongoing discussion questioning the value of FVC in the assessment and follow-up of patients with IPF. Could it be possible that total lung capacity and diffusion capacity for carbon monoxide actually better correlate to quality of life? Indeed, data from the Australian IPF registry showed no correlation between the decrease of FVC and QoL.

Quality of life seems like to important a factor to be in the dark about, so it might be a good idea to further study this pivotal aspect of the lives of people with IPF. With larger numbers of patients and prospective longitudinal analysis, researchers hope to asses which clinical parameters and outcomes correlate best with quality of life and disease perception, so they will be able to understand more precisely what each individual patient is going through.

Reference
European Clinical Respiratory Journal 2016, 3: 31090