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. 2015 Jun;11(2):175-183.
doi: 10.2174/1573398X11666150619182624.

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  1 , Sid Frankel  2 , Daphne LeSage  3 , Vibeke Strand  4 , Ami A Shah  5 , Lisa Christopher-Stine  5 , Sonye Danoff  5 , Laura K Hummers  5 , Jeffery J Swigris  6 , Dörte Huscher  7 , Angela M Christensen  8 , Sophia L Cenac  9 , Jen K Erbil  9 , Sancia Ferguson  8 , Ignacio Garcia-Valladares  9 , Harmanjot K Grewal  9 , Ana-Maria Orbai  5 , Katherine Clegg Smith  10 , Maithy Tran  1 , Clifton O Bingham 3rd  5 , Flavia V Castelino  11 , Aryeh Fischer  12 , Lesley Ann Saketkoo  13
Affiliations

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 et al. Curr Respir Med Rev. 2015 Jun.

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. 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.

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

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Conflict of interest statement

CONFLICT OF INTEREST

The authors confirm that this article content has no conflict of interest.

Figures

Fig. (1)
Fig. (1)
Post-focus group questionnaire development and implementation.
See this image and copyright information in PMC

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