title: Patient Perspectives in OMERACT Provide an Anchor for Future Metric Development and Improved Approaches to Healthcare Delivery in Connective Tissue Disease Related Interstitial Lung Disease (CTD-ILD).
abstract: OBJECTIVE
  The impact and natural history of connective tissue disease related interstitial lung disease (CTD-ILD) are poorly understood; and have not been previously described from the patient's perspective. This investigation sought insight into CTD-ILD from the patients' perspective to add to our knowledge of CTD-ILD, identify disease-specific areas of unmet need and gather potentially meaningful information towards development of disease-specific patient-reported outcome measures (PROMs).
  
  
  METHODS
  A mixed methods design incorporating patient focus groups (FGs) querying disease progression and life impact followed by questionnaires with items of importance generated by >250 ILD specialists were implemented among CTD-ILD patients with rheumatoid arthritis, idiopathic inflammatory myopathies, systemic sclerosis, and other CTD subtypes. FG data were analyzed through inductive analysis with five independent analysts, including a patient research partner. Questionnaires were analyzed through Fisher's Exact tests and hierarchal cluster analysis.
  
  
  RESULTS
  Six multicenter FGs included 45 patients.Biophysiologicthemes were cough and dyspnea, both pervasively impacting health related quality of life (HRQoL). Language indicating dyspnea was unexpected, unique and contextual.Psycho-socialthemes were Living with Uncertainty, Struggle over Self-Identity, and Self-Efficacy - with education and clinician communication strongly emphasised.All questionnaire itemswere rated 'moderately' to 'extremely' important with 10 items of highest importance identified by cluster analysis.
  
  
  CONCLUSIONS
  Patients with CTD-ILD informed our understanding of symptoms and impact on HRQoL. Cough and dyspnea are central to the CTD-ILD experience. Initial FGs have provided disease-specific content, context and language essential for reliable PROM development with questionnaires adding value in recognition of patients' concerns.
authors.affiliation: University of Toronto - Toronto, Canada.
authors.forename: Shikha
authors.initials: S
authors.lastname: Mittoo
authors.affiliation: University of Manitoba - Winnipeg, Canada.
authors.forename: Sid
authors.initials: S
authors.lastname: Frankel
authors.affiliation: Louisiana State Office of Public Health, Louisiana, New Orleans, USA.
authors.forename: Daphne
authors.initials: D
authors.lastname: LeSage
authors.affiliation: Stanford University, Palo Alto, USA.
authors.forename: Vibeke
authors.initials: V
authors.lastname: Strand
authors.affiliation: Johns Hopkins University School of Medicine - Baltimore, USA.
authors.forename: Ami A
authors.initials: AA
authors.lastname: Shah
authors.affiliation: Johns Hopkins University School of Medicine - Baltimore, USA.
authors.forename: Lisa
authors.initials: L
authors.lastname: Christopher-Stine
authors.affiliation: Johns Hopkins University School of Medicine - Baltimore, USA.
authors.forename: Sonye
authors.initials: S
authors.lastname: Danoff
authors.affiliation: Johns Hopkins University School of Medicine - Baltimore, USA.
authors.forename: Laura K
authors.initials: LK
authors.lastname: Hummers
authors.affiliation: National Jewish Health - Denver, USA.
authors.forename: Jeffery J
authors.initials: JJ
authors.lastname: Swigris
authors.affiliation: German Rheumatism Research Centre and Charité University Hospital, Berlin, Germany.
authors.forename: Dörte
authors.initials: D
authors.lastname: Huscher
authors.affiliation: Tulane University School of Medicine, New Orleans, USA.
authors.forename: Angela M
authors.initials: AM
authors.lastname: Christensen
authors.affiliation: Louisiana State University Health Sciences Center - New Orleans, USA.
authors.forename: Sophia L
authors.initials: SL
authors.lastname: Cenac
authors.affiliation: Louisiana State University Health Sciences Center - New Orleans, USA.
authors.forename: Jen K
authors.initials: JK
authors.lastname: Erbil
authors.affiliation: Tulane University School of Medicine, New Orleans, USA.
authors.forename: Sancia
authors.initials: S
authors.lastname: Ferguson
authors.affiliation: Louisiana State University Health Sciences Center - New Orleans, USA.
authors.forename: Ignacio
authors.initials: I
authors.lastname: Garcia-Valladares
authors.affiliation: Louisiana State University Health Sciences Center - New Orleans, USA.
authors.forename: Harmanjot K
authors.initials: HK
authors.lastname: Grewal
authors.affiliation: Johns Hopkins University School of Medicine - Baltimore, USA.
authors.forename: Ana-Maria
authors.initials: AM
authors.lastname: Orbai
authors.affiliation: Johns Hopkins Bloomberg School of Public Health, Baltimore, USA.
authors.forename: Katherine Clegg
authors.initials: KC
authors.lastname: Smith
authors.affiliation: University of Toronto - Toronto, Canada.
authors.forename: Maithy
authors.initials: M
authors.lastname: Tran
authors.affiliation: Johns Hopkins University School of Medicine - Baltimore, USA.
authors.forename: Clifton O
authors.initials: CO
authors.lastname: Bingham
authors.affiliation: Massachusetts General Hospital, Boston, USA.
authors.forename: Flavia V
authors.initials: FV
authors.lastname: Castelino
authors.affiliation: University of Colorado, Denver, USA.
authors.forename: Aryeh
authors.initials: A
authors.lastname: Fischer
authors.affiliation: Tulane University School of Medicine, New Orleans, USA ; New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center, New Orleans, USA.
authors.forename: Lesley Ann
authors.initials: LA
authors.lastname: Saketkoo
keywords: Communication; connective tissue disease; focus groups; interstitial lung disease; patient experience; patient reported outcome measures; questionnaire