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Health-related Quality of Life and Patient-reported Outcomes in Pulmonary Arterial Hypertension

¹ Division of Pulmonary and Critical Care Medicine, Department of Medicine, University of California San Francisco, San Francisco, California; ² Pulmonary and Critical Care Division, Department of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania; ³ Wall Center for Pulmonary Vascular Disease, Division of Pulmonary and Critical Care Medicine, Stanford University, Palo Alto, California; and ⁴ Gilead Sciences, Inc., Foster City, California

Correspondence and requests for reprints should be addressed to Hubert Chen, M.D., M.P.H., Pulmonary and Critical Care Division, University of California San Francisco, 350 Parnassus Avenue, Suite 609, San Francisco, CA 94143. E-mail: hubert.chen{at}ucsf.edu

ABSTRACT

Advances in our understanding of the basic pathophysiology of pulmonary arterial hypertension (PAH) has led to an expanding number of therapeutic options. The ultimate goals of therapy are to lengthen survival while improving symptoms and quality of life. A wealth of research in other conditions has established health-related quality of life (HRQoL) to be an important clinical endpoint. Until recently, however, little was known about HRQoL in PAH, and how best to measure it. Over the past few years, several studies have begun contributing to this growing area of research. Instruments used to assess HRQoL have varied between studies. The extent to which these instruments are valid in PAH depend on their specific measurement properties. In this article, we provide an overview of the different types of patient-reported outcomes (PROs) used in PAH, focusing in particular on the measurement of HRQoL. In the process, we review the current literature on HRQoL in PAH, summarize the available data from randomized controlled trials, and discuss the implications of these findings on future research. Despite significant progress, the study of HRQoL in PAH remains a nascent field relative to other conditions. As the use of PROs continues to increase, additional work will be needed to begin standardizing the reporting and interpretation of such outcomes in future clinical trials.

Key Words: health status • questionnaire • validation

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