TY - JOUR
T1 - 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)
AU - Mittoo, Shikha
AU - Frankel, Sid
AU - Lesage, Daphne
AU - Strand, Vibeke
AU - Shah, Ami A.
AU - Christopher-Stine, Lisa
AU - Danoff, Sonye
AU - Hummers, Laura K.
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 Clegg
AU - Tran, Maithy
AU - Bingham, Clifton O.
AU - Castelino, Flavia V.
AU - Fischer, Aryeh
AU - Saketkoo, Lesley Ann
N1 - Publisher Copyright:
© 2015 Bentham Science Publishers.
PY - 2015/9/1
Y1 - 2015/9/1
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.
AB - 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.
KW - Communication
KW - Connective tissue disease
KW - Focus groups
KW - Interstitial lung disease
KW - Patient experience
KW - Patient reported outcome measures
KW - Questionnaire
UR - http://www.scopus.com/inward/record.url?scp=84942100164&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84942100164&partnerID=8YFLogxK
U2 - 10.2174/1573398X11666150619182624
DO - 10.2174/1573398X11666150619182624
M3 - Article
AN - SCOPUS:84942100164
SN - 1573-398X
VL - 11
SP - 175
EP - 183
JO - Current Respiratory Medicine Reviews
JF - Current Respiratory Medicine Reviews
IS - 2
ER -