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)

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)

Volume: 11 Issue: 2

Author(s): Sophia L. Cenac, Lesley Ann Saketkoo, Aryeh Fischer, Flavia V. Castelino, Clifton O. Bingham III, Maithy Tran, Katherine Clegg Smith, Ana-Maria Orbai, Harmanjot K. Grewal, Ignacio Garcia-Valladares, Sancia Ferguson, Jen K. Erbil, Shikha Mittoo, Angela M. Christensen, Dorte Huscher, Jeffery J. Swigris, Laura K. Hummers, Sonye Danoff, Lisa Christopher-Stine, Ami A. Shah, Vibeke Strand, Daphne LeSage and Sid Frankel

Affiliation:

Keywords: Communication, connective tissue disease, focus groups, interstitial lung disease, patient experience, patient reported outcome measures, questionnaire.

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.

Cite this article as:

L. Cenac Sophia, Ann Saketkoo Lesley, Fischer Aryeh, V. Castelino Flavia, Bingham III Clifton O., Tran Maithy, Clegg Smith Katherine, Orbai Ana-Maria, K. Grewal Harmanjot, Garcia-Valladares Ignacio, Ferguson Sancia, K. Erbil Jen, Mittoo Shikha, M. Christensen Angela, Huscher Dorte, J. Swigris Jeffery, K. Hummers Laura, Danoff Sonye, Christopher-Stine Lisa, A. Shah Ami, Strand Vibeke, LeSage Daphne and Frankel Sid, 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 2015; 11 (2) . https://dx.doi.org/10.2174/1573398X11666150619182624