Patient-reported outcome measures in systemic sclerosis–related interstitial lung disease for clinical practice and clinical trials

Lesley Ann Saketkoo; Mary Beth Scholand; Matthew R. Lammi; Anne Marie Russell

doi:10.1177/2397198320904178

Patient-reported outcome measures in systemic sclerosis–related interstitial lung disease for clinical practice and clinical trials

Lesley Ann Saketkoo^*, Mary Beth Scholand, Matthew R. Lammi, Anne Marie Russell

^*Corresponding author for this work

Nursing and Midwifery

Research output: Contribution to journal › Article › peer-review

Abstract

Systemic sclerosis (SSc) is a progressive vasculopathic, fibrosing autoimmune condition, portending significant mortality; wherein interstitial lung disease (ILD) is the leading cause of death. Although lacking a definitive cure, therapeutics for (SSc-ILD) that stave progression exist with further promising primary and adjuvant compounds in development, as well as interventions to reduce symptom burden and increase quality of life. To date, there has been a significant but varied history related to systemic sclerosis–related interstitial lung disease trial design and endpoint designation. This is especially true of endpoints measuring patient-reported perceptions of efficacy and tolerability. This article describes the underpinnings and complexity of the science, methodology, and current state of patient-reported outcome measures used in (SSc-ILD) systemic sclerosis–related interstitial lung disease in clinical practice and trials.

Original language	English
Pages (from-to)	48-60
Number of pages	13
Journal	Journal of Scleroderma and Related Disorders
Volume	5
Issue number	2
DOIs	https://doi.org/10.1177/2397198320904178
Publication status	Published - 2020

Bibliographical note

Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This work was supported in part by 1 U54 GM104940 from the National Institute of General Medical Sciences of the National Institutes of Health (NIH) in the United States, which funds the Louisiana Clinical and Translational Science Center (M.R.L.). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. This work was also supported in part by COBRE Pilot Program grant number 1P306M106392-01A1 (M.R.L.) in the United States and supported in part by National Institutes of Health Research in the United Kingdom.

Publisher Copyright:
© The Author(s) 2020 Article reuse guidelines:.

Keywords

cough
dyspnea
health-related quality of life
interstitial lung disease
outcomes
patient-reported
pulmonary fibrosis
scleroderma
Systemic sclerosis

ASJC Scopus subject areas

Immunology and Allergy
Rheumatology
Immunology

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title = "Patient-reported outcome measures in systemic sclerosis–related interstitial lung disease for clinical practice and clinical trials",

abstract = "Systemic sclerosis (SSc) is a progressive vasculopathic, fibrosing autoimmune condition, portending significant mortality; wherein interstitial lung disease (ILD) is the leading cause of death. Although lacking a definitive cure, therapeutics for (SSc-ILD) that stave progression exist with further promising primary and adjuvant compounds in development, as well as interventions to reduce symptom burden and increase quality of life. To date, there has been a significant but varied history related to systemic sclerosis–related interstitial lung disease trial design and endpoint designation. This is especially true of endpoints measuring patient-reported perceptions of efficacy and tolerability. This article describes the underpinnings and complexity of the science, methodology, and current state of patient-reported outcome measures used in (SSc-ILD) systemic sclerosis–related interstitial lung disease in clinical practice and trials.",

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note = "Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This work was supported in part by 1 U54 GM104940 from the National Institute of General Medical Sciences of the National Institutes of Health (NIH) in the United States, which funds the Louisiana Clinical and Translational Science Center (M.R.L.). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. This work was also supported in part by COBRE Pilot Program grant number 1P306M106392-01A1 (M.R.L.) in the United States and supported in part by National Institutes of Health Research in the United Kingdom. Publisher Copyright: {\textcopyright} The Author(s) 2020 Article reuse guidelines:.",

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Patient-reported outcome measures in systemic sclerosis–related interstitial lung disease for clinical practice and clinical trials

Abstract

Bibliographical note

Keywords

ASJC Scopus subject areas

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