Patient-centered Outcomes Research in Interstitial Lung Disease: An Official American Thoracic Society Research Statement
Kerri I. Aronson, Sonye K. Danoff, Anne‐Marie Russell, Christopher J. Ryerson, Atsushi Suzuki, Marlies Wijsenbeek, Sabrina Bajwah, Pauline Bianchi, Tamera J. Corte, Joyce Lee, Kathleen O. Lindell, Toby M. Maher, Fernando J. Martínez, Paula Meek, Ganesh Raghu, Glenda Rouland, Rick Rudell, Monika M. Safford, Jamie Sheth, Jeffrey J. Swigris
Abstract
Abstract Background In the past two decades, many advances have been made to our understanding of interstitial lung disease (ILD) and the way we approach its treatment. Despite this, many questions remain unanswered, particularly those related to how the disease and its therapies impact outcomes that are most important to patients. There is currently a lack of guidance on how to best define and incorporate these patient-centered outcomes in ILD research. Objectives To summarize the current state of patient-centered outcomes research in ILD, identify gaps in knowledge and research, and highlight opportunities and methods for future patient-centered research agendas in ILD. Methods An international interdisciplinary group of experts was assembled. The group identified top patient-centered outcomes in ILD, reviewed available literature for each outcome, highlighted important discoveries and knowledge gaps, and formulated research recommendations. Results The committee identified seven themes around patient-centered outcomes as the focus of the statement. After a review of the literature and expert committee discussion, we developed 28 research recommendations. Conclusions Patient-centered outcomes are key to ascertaining whether and how ILD and interventions used to treat it affect the way patients feel and function in their daily lives. Ample opportunities exist to conduct additional work dedicated to elevating and incorporating patient-centered outcomes in ILD research.