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

Research output: Contribution to journalReview article

24 Scopus citations

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 - Apr 2014

Keywords

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

ASJC Scopus subject areas

  • Rheumatology
  • Immunology and Allergy
  • Immunology

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