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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

Reconciling healthcare professional and patient perspectives in the development of disease activity and response criteria in connective tissue disease-related interstitial lung diseases
Reconciling healthcare professional and patient perspectives in the development of disease activity and response criteria in connective tissue disease-related interstitial lung diseases
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.
0315-162X
792-798
Saketkoo, Lesley Ann
ed27948a-5d20-4d24-be5f-9265933c41ee
Mittoo, Shikha
2502958f-0ed8-4f16-b9fd-3cb6dacaf6a7
Frankel, Sid
6cdad3d1-cfda-4ec3-8cd1-85df8d29c72d
LeSage, Daphne
ed814282-ca13-4088-b3f2-ed1949168543
Sarver, Catherine
d4faa4af-9602-4e76-9e01-22f5385fa4ea
Phillips, Kristine
c8d67449-5190-47a0-b39e-e147cb361159
Strand, Vibeke
f1f60aa5-19da-46a8-bfcf-6fc068a8fc9b
Matteson, Eric L.
46023c35-2fcc-485f-91f3-f1d738db3f9b
Richeldi, Luca
47177d9c-731a-49a1-9cc6-4ac8f6bbbf26
Saketkoo, Lesley Ann
ed27948a-5d20-4d24-be5f-9265933c41ee
Mittoo, Shikha
2502958f-0ed8-4f16-b9fd-3cb6dacaf6a7
Frankel, Sid
6cdad3d1-cfda-4ec3-8cd1-85df8d29c72d
LeSage, Daphne
ed814282-ca13-4088-b3f2-ed1949168543
Sarver, Catherine
d4faa4af-9602-4e76-9e01-22f5385fa4ea
Phillips, Kristine
c8d67449-5190-47a0-b39e-e147cb361159
Strand, Vibeke
f1f60aa5-19da-46a8-bfcf-6fc068a8fc9b
Matteson, Eric L.
46023c35-2fcc-485f-91f3-f1d738db3f9b
Richeldi, Luca
47177d9c-731a-49a1-9cc6-4ac8f6bbbf26

Saketkoo, Lesley Ann, Mittoo, Shikha, Frankel, Sid, LeSage, Daphne, Sarver, Catherine, Phillips, Kristine, Strand, Vibeke, Matteson, Eric L. and Richeldi, Luca (2014) Reconciling healthcare professional and patient perspectives in the development of disease activity and response criteria in connective tissue disease-related interstitial lung diseases. The Journal of Rheumatology, 41 (4), 792-798. (doi:10.3899/jrheum.131251). (PMID:24488412)

Record type: Article

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.

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e-pub ahead of print date: 1 February 2014
Published date: April 2014
Organisations: Clinical & Experimental Sciences

Identifiers

Local EPrints ID: 369048
URI: https://eprints.soton.ac.uk/id/eprint/369048
ISSN: 0315-162X
PURE UUID: c1e271ed-900a-4fb9-9046-e3e0488c43bf

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Date deposited: 24 Sep 2014 10:59
Last modified: 08 Jun 2018 16:32

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Contributors

Author: Lesley Ann Saketkoo
Author: Shikha Mittoo
Author: Sid Frankel
Author: Daphne LeSage
Author: Catherine Sarver
Author: Kristine Phillips
Author: Vibeke Strand
Author: Eric L. Matteson
Author: Luca Richeldi

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