Please use this identifier to cite or link to this item: https://hdl.handle.net/2440/128602
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Type: Journal article
Title: Can patient-reported symptoms be used to measure disease activity in systemic sclerosis?
Author: Ross, L.
Stevens, W.
Wilson, M.
Strickland, G.
Walker, J.
Sahhar, J.
Ngian, G.-S.
Roddy, J.
Major, G.
Proudman, S.
Baron, M.
Nikpour, M.
Citation: Arthritis Care and Research, 2020; 72(10):1459-1465
Publisher: Wiley
Issue Date: 2020
ISSN: 2151-464X
2151-4658
Statement of
Responsibility: 
Laura Ross, Wendy Stevens, Michelle Wilson, Gemma Strickland, Jennifer Walker, Joanne Sahhar, Gene-Siew Ngian, Janet Roddy, Gabor Major, Susanna Proudman, Murray Baron, and Mandana Nikpour
Abstract: Objective: To evaluate the association between patient-reported symptoms and changes in disease activity over time in systemic sclerosis (SSc). Methods: Using data from 1,636 patients enrolled in the Australian Scleroderma Cohort Study, we used generalised estimating equations to determine the relationship between patient-reported worsening of Raynaud phenomenon (RP), skin involvement and breathlessness in the month preceding each study visit and features of disease activity in the corresponding organ systems. The associations between the following parameters were analysed: patient-reported worsening RP and the presence of new-onset digital pitting and digital ulcers; patient-reported worsening skin involvement and increasing modified Rodnan skin score (mRSS), new areas of skin involvement and new-onset joint contractures; patient-reported worsening breathlessness and deteriorating respiratory functions tests (RFTs), indicated by 10% decrease in forced vital capacity (FVC) and 15% decrease in diffusing capacity of carbon monoxide (DLCO), new-onset interstitial lung disease (ILD) and new-onset pulmonary arterial hypertension (PAH). Results: We found a significant association between patient-reported worsening RP and the presence of digital ulcers (OR 1.53; 95%CI:0.60-0.93); patient-reported worsening skin involvement and increasing mRSS (OR 2.10; 95%CI:1.54-2.86); and worsening patient breathlessness and deteriorating RFTs (FVC OR 2.12; 95%CI:1.70-2.65; DLCO OR 1.97; 95%CI:1.34-2.02), new-onset ILD (OR 1.91; 95%CI:1.40-2.61) and new-onset PAH (OR 5.08; 95%CI:3.59-7.19). Conclusion: These results demonstrate that patient-reported symptoms are associated with clinically meaningful changes in disease activity in SSc patients. This suggests that when objective measures of change in disease status are unavailable, patient-reported symptoms could be used to indicate a change in SSc-disease activity.
Keywords: Systemic sclerosis
Rights: © 2019, American College of Rheumatology
DOI: 10.1002/acr.24053
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