It's an oft-noted aspect of healthcare: the discrepancy between the perception of the doctor and that of the patient. While (some) doctors have a tendency to focus more strongly on numbers and test results, most patients tend to focus more on the personal experience of their disease. With idiopathic pulmonary fibrosis (IPF) this is also the case, and researchers now argue for a more patient-centered method to study IPF.
One of the test results that pulmonologists tend to focus on when treating IPF, is 'FVC', or 'forced vital capacity'. And while this is certainly a very important aspect of the way your lungs are functioning, it is hardly an expression that patients use when talking about their IPF. However, in clinical trials investigating new therapies for IPF, treatment efficacy is more often than not defined as a reduction in FVC rate. And this should change, researchers say.
They base this remark on insights gained from an IPF study performed in the United States. In this study, the number of patients that were hospitalized because of respiratory-related complaints were analyzed, instead of a reduction in FVC rate. The results showed that patients receiving a specific IPF treatment had a lower risk of respiratory-related hospitalizations.
This was the first time a reduction in respiratory-related hospitalizations was used as an outcome measure in an IPF study
This was the first time a reduction in respiratory-related hospitalizations was used as an outcome measure in an IPF study. Researchers see several benefits when including this patient-centered outcome measure in future clinical trials. One big advantage is that it can easily be used by doctors consulting patients about the possible pros and cons of a specific treatment. A decrease in hospital visits is very tangible for patients and may aid in the decision-making process. According to the researchers, it could also influence development of treatment guidelines and medical care reimbursements. In addition, a treatment which reduces the number of times a patient is hospitalized is directly relevant to one of the most important goals in IPF treatment: patients living a healthier life.