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

Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation

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

58 Citations (Scopus)

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
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

Keywords

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

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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

@article{6d10309163a742bdacb368a49e3dd21a,

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.}",

year = "2021",

month = jul,

day = "15",

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

language = "English",

volume = "204",

pages = "E3--E23",

journal = "American Journal of Respiratory and Critical Care Medicine",

issn = "1073-449X",

publisher = "American Thoracic Society",

number = "2",

}

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.

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

UR - http://www.scopus.com/inward/record.url?scp=85110770862&partnerID=8YFLogxK

U2 - 10.1164/rccm.202105-1193ST

DO - 10.1164/rccm.202105-1193ST

M3 - Review article

AN - SCOPUS:85110770862

SN - 1073-449X

VL - 204

SP - E3-E23

JO - American Journal of Respiratory and Critical Care Medicine

JF - American Journal of Respiratory and Critical Care Medicine

IS - 2

ER -

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

Abstract

Keywords

UN SDGs

Access to Document

Other files and links

Fingerprint

Cite this