Patient-centered outcomes research in interstitial lung disease: An official american thoracic society research statement

Kerri I. Aronson*, Jeffrey J. Swigris, Sabrina Bajwah, Pauline Bianchi, Tamera J. Corte, Sonye K. Danoff, Joyce S. Lee, Kathleen O. Lindell, Toby Maher, Fernando J. Martinez, Paula M. Meek, Ganesh Raghu, Glenda Rouland, Rick Rudell, Anne Marie Russell, Christopher J. Ryerson, Monika M. Safford, Jamie S. Sheth, Atsushi Suzuki, Marlies S. Wijsenbeek

*Corresponding author for this work

Research output: Contribution to journalReview articlepeer-review

37 Citations (Scopus)


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.

Original languageEnglish
Pages (from-to)E3-E23
JournalAmerican Journal of Respiratory and Critical Care Medicine
Issue number2
Publication statusPublished - 15 Jul 2021


  • Health-related quality of life
  • Interstitial lung disease
  • Patient-centered outcomes


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