Assessment of Patient-Reported Outcomes in Sarcoidosis Patients: A Review
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Abstract
Patient-reported outcomes are standardized reports provided by patients about their own health-related quality of life, health status, their symptoms or functional status associated with the health care or treatment they have received. Patient-reported outcomes are measured by questionnaires that are scientific instruments validated in different clinical conditions. The aim of this review is to provide the updated information on patient-reported outcomes use in assessment of pharmacotherapy effects in patients with pulmonary sarcoidosis. Sarcoidosis is a chronic disease in which treatment decisions for the majority of patients are based predominantly on health-related quality of life measurements. It is a chronic multisystem granulomatous inflammatory disease of unknown origin that is most commonly present in the lungs but may also involve any other organ. Therefore, it is important not only to assess their pulmonary symptoms like dyspnea or cough, but also those that originate from other organs and even constitutional ones, like fatigue or depression.
We separately presented the health-related quality of life and health status, as well as symptom-specific patient-reported outcomes used in sarcoidosis patients that measure fatigue, dyspnea, cough, and depression. Since corelations between objective and subjective disease outcomes in sarcoidosis patients are often mild or moderate or even do not exist at all, a consensus has emerged to use both of these outcomes in clinical trials and routine practice management. Therefore, the World Association of Sarcoidosis and other Granulomatous Disorders recommended that all research studies should incorporate health-related quality of life measurement.
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