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)

Shikha Mittoo, Sid Frankel, Daphne Lesage, Vibeke Strand, Ami Shah, Lisa Christopher-Stine, Sonye Danoff, Laura Hummers, Jeffery J. Swigris, Dörte Huscher, Angela M. Christensen, Sophia L. Cenac, Jen K. Erbil, Sancia Ferguson, Ignacio Garcia-Valladares, Harmanjot K. Grewal, Ana-Maria Orbai, Katherine Smith, Maithy Tran, Clifton BinghamFlavia V. Castelino, Aryeh Fischer, Lesley Ann Saketkoo

Research output: Contribution to journalArticle

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 CTDILD 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. Biophysiologic themes were cough and dyspnea, both pervasively impacting health related quality of life (HRQoL). Language indicating dyspnea was unexpected, unique and contextual. Psycho-social themes were Living with Uncertainty, Struggle over Self-Identity, and Self-Efficacy - with education and clinician communication strongly emphasised. All questionnaire items were rated ‘moderately’ to ‘extremely’ important with 10 items of highest importance identified by cluster analysis. Conclusion: 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.

Original languageEnglish (US)
Pages (from-to)175-183
Number of pages9
JournalCurrent Respiratory Medicine Reviews
Volume11
Issue number2
StatePublished - Sep 1 2015

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Connective Tissue Diseases
Interstitial Lung Diseases
Delivery of Health Care
Focus Groups
Dyspnea
Cough
Cluster Analysis
Language
Quality of Life
Myositis
Systemic Scleroderma
Self Efficacy
Uncertainty
Disease Progression
Rheumatoid Arthritis
Communication
Education
Surveys and Questionnaires
Research

Keywords

  • Communication
  • Connective tissue disease
  • Focus groups
  • Interstitial lung disease
  • Patient experience
  • Patient reported outcome measures
  • Questionnaire

ASJC Scopus subject areas

  • Pulmonary and Respiratory Medicine

Cite this

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). / Mittoo, Shikha; Frankel, Sid; Lesage, Daphne; Strand, Vibeke; Shah, Ami; Christopher-Stine, Lisa; Danoff, Sonye; Hummers, Laura; Swigris, Jeffery J.; Huscher, Dörte; Christensen, Angela M.; Cenac, Sophia L.; Erbil, Jen K.; Ferguson, Sancia; Garcia-Valladares, Ignacio; Grewal, Harmanjot K.; Orbai, Ana-Maria; Smith, Katherine; Tran, Maithy; Bingham, Clifton; Castelino, Flavia V.; Fischer, Aryeh; Saketkoo, Lesley Ann.

In: Current Respiratory Medicine Reviews, Vol. 11, No. 2, 01.09.2015, p. 175-183.

Research output: Contribution to journalArticle

Mittoo, S, Frankel, S, Lesage, D, Strand, V, Shah, A, Christopher-Stine, L, Danoff, S, Hummers, L, Swigris, JJ, Huscher, D, Christensen, AM, Cenac, SL, Erbil, JK, Ferguson, S, Garcia-Valladares, I, Grewal, HK, Orbai, A-M, Smith, K, Tran, M, Bingham, C, Castelino, FV, Fischer, A & Saketkoo, LA 2015, '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)', Current Respiratory Medicine Reviews, vol. 11, no. 2, pp. 175-183.
Mittoo, Shikha ; Frankel, Sid ; Lesage, Daphne ; Strand, Vibeke ; Shah, Ami ; Christopher-Stine, Lisa ; Danoff, Sonye ; Hummers, Laura ; Swigris, Jeffery J. ; Huscher, Dörte ; Christensen, Angela M. ; Cenac, Sophia L. ; Erbil, Jen K. ; Ferguson, Sancia ; Garcia-Valladares, Ignacio ; Grewal, Harmanjot K. ; Orbai, Ana-Maria ; Smith, Katherine ; Tran, Maithy ; Bingham, Clifton ; Castelino, Flavia V. ; Fischer, Aryeh ; Saketkoo, Lesley Ann. / 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). In: Current Respiratory Medicine Reviews. 2015 ; Vol. 11, No. 2. pp. 175-183.
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AU - Frankel, Sid

AU - Lesage, Daphne

AU - Strand, Vibeke

AU - Shah, Ami

AU - Christopher-Stine, Lisa

AU - Danoff, Sonye

AU - Hummers, Laura

AU - Swigris, Jeffery J.

AU - Huscher, Dörte

AU - Christensen, Angela M.

AU - Cenac, Sophia L.

AU - Erbil, Jen K.

AU - Ferguson, Sancia

AU - Garcia-Valladares, Ignacio

AU - Grewal, Harmanjot K.

AU - Orbai, Ana-Maria

AU - Smith, Katherine

AU - Tran, Maithy

AU - Bingham, Clifton

AU - Castelino, Flavia V.

AU - Fischer, Aryeh

AU - Saketkoo, Lesley Ann

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N2 - 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 CTDILD 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. Biophysiologic themes were cough and dyspnea, both pervasively impacting health related quality of life (HRQoL). Language indicating dyspnea was unexpected, unique and contextual. Psycho-social themes were Living with Uncertainty, Struggle over Self-Identity, and Self-Efficacy - with education and clinician communication strongly emphasised. All questionnaire items were rated ‘moderately’ to ‘extremely’ important with 10 items of highest importance identified by cluster analysis. Conclusion: 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.

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