Clinical Outcomes in Interstitial Lung Diseases : Measuring and improving quality of life

Interstitial lung diseases (ILDs) contain a wide variety of disorders, usually affecting both lungs diffusely. The most common ILDs are idiopathic pulmonary fibrosis and sarcoidosis. ILDs have a major impact on quality of life. Although it is well-known that quality of life is impaired in ILDs, treatment is often mainly focused on improving physiological outcome measures, such as pulmonary function parameters.
These physiological outcome measures frequently do not reflect the impact ILDs have on a patient’s quality of life. Patient-reported outcome measures (PROMs) can be used for measuring quality of life and symptom burden. Unfortunately, there is lack of well-developed and validated ILD-specific PROMs and other measures to assess quality of life and symptoms. Also, interventions on improving quality of life in ILDs are scarce.
The aim of this thesis was to measure and improve quality of life in ILDs by generating better clinical outcome measures for quality of life and developing interventions focused on improving quality of life.