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 Lawrence Matteson

Research output: Contribution to journalArticle

19 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)792-798
Number of pages7
JournalJournal of Rheumatology
Volume41
Issue number4
DOIs
StatePublished - 2014

Fingerprint

Connective Tissue Diseases
Interstitial Lung Diseases
Idiopathic Pulmonary Fibrosis
Delivery of Health Care
Outcome Assessment (Health Care)
Clinical Trials
Patient Participation
Rheumatic Diseases
Comorbidity
Morbidity
Mortality
Therapeutics

Keywords

  • Connective tissue disease
  • Interstitial lung disease
  • Outcome and process assessment
  • Patient perspective
  • Rheumatoid arthritis
  • Systemic sclerosis

ASJC Scopus subject areas

  • Rheumatology
  • Immunology
  • Immunology and Allergy
  • Medicine(all)

Cite this

Reconciling healthcare professional and patient perspectives in the development of disease activity and response criteria in connective tissue disease-related interstitial lung diseases. / Saketkoo, Lesley Ann; Mittoo, Shikha; Frankel, Sid; LeSage, Daphne; Sarver, Catherine; Phillips, Kristine; Strand, Vibeke; Matteson, Eric Lawrence.

In: Journal of Rheumatology, Vol. 41, No. 4, 2014, p. 792-798.

Research output: Contribution to journalArticle

Saketkoo, Lesley Ann ; Mittoo, Shikha ; Frankel, Sid ; LeSage, Daphne ; Sarver, Catherine ; Phillips, Kristine ; Strand, Vibeke ; Matteson, Eric Lawrence. / Reconciling healthcare professional and patient perspectives in the development of disease activity and response criteria in connective tissue disease-related interstitial lung diseases. In: Journal of Rheumatology. 2014 ; Vol. 41, No. 4. pp. 792-798.
@article{def9e07ef7064517ab17415c3e2624ff,
title = "Reconciling healthcare professional and patient perspectives in the development of disease activity and response criteria in connective tissue disease-related interstitial lung diseases",
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.",
keywords = "Connective tissue disease, Interstitial lung disease, Outcome and process assessment, Patient perspective, Rheumatoid arthritis, Systemic sclerosis",
author = "Saketkoo, {Lesley Ann} and Shikha Mittoo and Sid Frankel and Daphne LeSage and Catherine Sarver and Kristine Phillips and Vibeke Strand and Matteson, {Eric Lawrence}",
year = "2014",
doi = "10.3899/jrheum.131251",
language = "English (US)",
volume = "41",
pages = "792--798",
journal = "Journal of Rheumatology",
issn = "0315-162X",
publisher = "Journal of Rheumatology",
number = "4",

}

TY - JOUR

T1 - Reconciling healthcare professional and patient perspectives in the development of disease activity and response criteria in connective tissue disease-related interstitial lung diseases

AU - Saketkoo, Lesley Ann

AU - Mittoo, Shikha

AU - Frankel, Sid

AU - LeSage, Daphne

AU - Sarver, Catherine

AU - Phillips, Kristine

AU - Strand, Vibeke

AU - Matteson, Eric Lawrence

PY - 2014

Y1 - 2014

N2 - 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.

AB - 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.

KW - Connective tissue disease

KW - Interstitial lung disease

KW - Outcome and process assessment

KW - Patient perspective

KW - Rheumatoid arthritis

KW - Systemic sclerosis

UR - http://www.scopus.com/inward/record.url?scp=84897447766&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84897447766&partnerID=8YFLogxK

U2 - 10.3899/jrheum.131251

DO - 10.3899/jrheum.131251

M3 - Article

C2 - 24488412

AN - SCOPUS:84897447766

VL - 41

SP - 792

EP - 798

JO - Journal of Rheumatology

JF - Journal of Rheumatology

SN - 0315-162X

IS - 4

ER -