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

doi:10.1164/rccm.202105-1193ST

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

Nursing and Midwifery

Research output: Contribution to journal › Review article › peer-review

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.

Original language	English
Pages (from-to)	E3-E23
Number of pages	21
Journal	American Journal of Respiratory and Critical Care Medicine
Volume	204
Issue number	2
DOIs	https://doi.org/10.1164/rccm.202105-1193ST
Publication status	Published - 15 Jul 2021

Bibliographical note

Funding Information:
The authors thank the patients, Rick Rudell and Glenda Rouland, for their participation and invaluable contributions in the development of this research statement. The authors thank Drew N. Wright, Assistant Librarian at the Samuel J. Wood Library, Weill Cornell Medical College, for his assistance with the literature reviews for this research statement.

Publisher Copyright:
Copyright © 2021 by the American Thoracic Society.

Keywords

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

ASJC Scopus subject areas

Pulmonary and Respiratory Medicine
Critical Care and Intensive Care Medicine

Access to Document

10.1164/rccm.202105-1193ST

Cite this

Aronson, K. I., Swigris, J. J., Bajwah, S., Bianchi, P., Corte, T. J., Danoff, S. K., Lee, J. S., Lindell, K. O., Maher, T., Martinez, F. J., Meek, P. M., Raghu, G., Rouland, G., Rudell, R., Russell, A. M., Ryerson, C. J., Safford, M. M., Sheth, J. S., Suzuki, A., & Wijsenbeek, M. S. (2021). Patient-centered outcomes research in interstitial lung disease: An official american thoracic society research statement. American Journal of Respiratory and Critical Care Medicine, 204(2), E3-E23. https://doi.org/10.1164/rccm.202105-1193ST

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

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.",

keywords = "Health-related quality of life, Interstitial lung disease, Patient-centered outcomes",

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

note = "Funding Information: The authors thank the patients, Rick Rudell and Glenda Rouland, for their participation and invaluable contributions in the development of this research statement. The authors thank Drew N. Wright, Assistant Librarian at the Samuel J. Wood Library, Weill Cornell Medical College, for his assistance with the literature reviews for this research statement. Publisher Copyright: Copyright {\textcopyright} 2021 by the American Thoracic Society.",

year = "2021",

month = jul,

day = "15",

doi = "10.1164/rccm.202105-1193ST",

language = "English",

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Aronson, KI, Swigris, JJ, Bajwah, S, Bianchi, P, Corte, TJ, Danoff, SK, Lee, JS, Lindell, KO, Maher, T, Martinez, FJ, Meek, PM, Raghu, G, Rouland, G, Rudell, R, Russell, AM, Ryerson, CJ, Safford, MM, Sheth, JS, Suzuki, A & Wijsenbeek, MS 2021, 'Patient-centered outcomes research in interstitial lung disease: An official american thoracic society research statement', American Journal of Respiratory and Critical Care Medicine, vol. 204, no. 2, pp. E3-E23. https://doi.org/10.1164/rccm.202105-1193ST

TY - JOUR

T1 - Patient-centered outcomes research in interstitial lung disease

T2 - An official american thoracic society research statement

AU - Aronson, Kerri I.

AU - Swigris, Jeffrey J.

AU - Bajwah, Sabrina

AU - Bianchi, Pauline

AU - Corte, Tamera J.

AU - Danoff, Sonye K.

AU - Lee, Joyce S.

AU - Lindell, Kathleen O.

AU - Maher, Toby

AU - Martinez, Fernando J.

AU - Meek, Paula M.

AU - Raghu, Ganesh

AU - Rouland, Glenda

AU - Rudell, Rick

AU - Russell, Anne Marie

AU - Ryerson, Christopher J.

AU - Safford, Monika M.

AU - Sheth, Jamie S.

AU - Suzuki, Atsushi

AU - Wijsenbeek, Marlies S.

N1 - Funding Information: The authors thank the patients, Rick Rudell and Glenda Rouland, for their participation and invaluable contributions in the development of this research statement. The authors thank Drew N. Wright, Assistant Librarian at the Samuel J. Wood Library, Weill Cornell Medical College, for his assistance with the literature reviews for this research statement. Publisher Copyright: Copyright © 2021 by the American Thoracic Society.

PY - 2021/7/15

Y1 - 2021/7/15

N2 - 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.

AB - 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.

KW - Health-related quality of life

KW - Interstitial lung disease

KW - Patient-centered outcomes

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U2 - 10.1164/rccm.202105-1193ST

DO - 10.1164/rccm.202105-1193ST

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AN - SCOPUS:85110770862

SN - 1073-449X

VL - 204

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JO - American Journal of Respiratory and Critical Care Medicine

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ER -

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

Abstract

Bibliographical note

Keywords

ASJC Scopus subject areas

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