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Research ArticleOMERACT

Reconciling Healthcare Professional and Patient Perspectives in the Development of Disease Activity and Response Criteria in Connective Tissue Disease–related Interstitial Lung Diseases

Lesley Ann Saketkoo, Shikha Mittoo, Sid Frankel, Daphne LeSage, Catherine Sarver, Kristine Phillips, Vibeke Strand, Eric L. Matteson and the OMERACT Connective Tissue Disease–Interstitial Lung Diseases Working Group
The Journal of Rheumatology April 2014, 41 (4) 792-798; DOI: https://doi.org/10.3899/jrheum.131251
Lesley Ann Saketkoo
From the Louisiana State University (LSU) Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, LSU Health Sciences Center, New Orleans, Louisiana, USA; University of Toronto, Interstitial Lung Disease Program, University Health Network/Mount Sinai Hospital, Toronto, Ontario; Faculty of Social Work, University of Manitoba, Winnipeg, Manitoba, Canada; Louisiana Office of Public Health, Department of Health and Human Services, New Orleans, Louisiana; Division of Rheumatology/Internal Medicine, University of Michigan, Ann Arbor, Michigan; Division of Immunology, Stanford University, Palo Alto, California; and Division of Rheumatology, Mayo Clinic, Rochester, Minnesota, USA.
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Shikha Mittoo
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Sid Frankel
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Daphne LeSage
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Catherine Sarver
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Kristine Phillips
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Vibeke Strand
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Eric L. Matteson
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Abstract

Interstitial lung diseases (ILD), including those related to connective tissue disease (CTD), and idiopathic pulmonary fibrosis (IPF) carry high morbidity and mortality. Great efforts are under way to develop and investigate meaningful treatments in the context of clinical trials. However, efforts have been challenged by a lack of validated outcome measures and by inconsistent use of measures in clinical trials. Lack of consensus has fragmented effective use of strategies in CTD-ILD and IPF, with a history of resultant difficulties in obtaining agency approval of treatment interventions. Until recently, the patient perspective to determine domains and outcome measures in CTD-ILD and IPF had never been applied. Efforts described here demonstrate unequivocally the value and influence of patient involvement on core set development. Regarding CTD-ILD, this is the first OMERACT working group to directly address a manifestation/comorbidity of a rheumatic disease (ILD) as well as a disease not considered rheumatic (IPF). The OMERACT 11 proceedings of the CTD-ILD Working Group describe the forward and lateral process to include both the medical and patient perspectives in the urgently needed identification of a core set of preliminary domains and outcome measures in CTD-ILD and IPF.

Key Indexing Terms:
  • INTERSTITIAL LUNG DISEASE
  • CONNECTIVE TISSUE DISEASE
  • OUTCOME AND PROCESS ASSESSMENT
  • PATIENT PERSPECTIVE
  • RHEUMATOID ARTHRITIS
  • SYSTEMIC SCLEROSIS
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The Journal of Rheumatology
Vol. 41, Issue 4
1 Apr 2014
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Reconciling Healthcare Professional and Patient Perspectives in the Development of Disease Activity and Response Criteria in Connective Tissue Disease–related Interstitial Lung Diseases
Lesley Ann Saketkoo, Shikha Mittoo, Sid Frankel, Daphne LeSage, Catherine Sarver, Kristine Phillips, Vibeke Strand, Eric L. Matteson, the OMERACT Connective Tissue Disease–Interstitial Lung Diseases Working Group
The Journal of Rheumatology Apr 2014, 41 (4) 792-798; DOI: 10.3899/jrheum.131251

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Reconciling Healthcare Professional and Patient Perspectives in the Development of Disease Activity and Response Criteria in Connective Tissue Disease–related Interstitial Lung Diseases
Lesley Ann Saketkoo, Shikha Mittoo, Sid Frankel, Daphne LeSage, Catherine Sarver, Kristine Phillips, Vibeke Strand, Eric L. Matteson, the OMERACT Connective Tissue Disease–Interstitial Lung Diseases Working Group
The Journal of Rheumatology Apr 2014, 41 (4) 792-798; DOI: 10.3899/jrheum.131251
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  • Article
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    • Background
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Keywords

INTERSTITIAL LUNG DISEASE
CONNECTIVE TISSUE DISEASE
OUTCOME AND PROCESS ASSESSMENT
PATIENT PERSPECTIVE
RHEUMATOID ARTHRITIS
SYSTEMIC SCLEROSIS

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Disease-specific Outcomes II

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  • Polymyalgia Rheumatica (PMR) Special Interest Group at OMERACT 11: Outcomes of Importance for Patients with PMR
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  • interstitial lung disease
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  • patient perspective
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  • systemic sclerosis

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