Background/Purpose: Systemic sclerosis (SSc) is a rare heterogenic disease, with visceral, skin and vascular damage associated with a reduced life expectancy, disability and worsening of quality of life. Evaluation of health related quality of life (HRQoL) is important for a more comprehensive approach to SSc patients. The purpose of our study was to assess the impact of SSc clinical manifestations in HRQoL from the patient and physician perspectives.

Methods:  44 consecutive SSc patients with limited (n=32) and diffuse (n=12) cutaneous subsets, from a single referral center and classified according to the 2013 ACR/EULAR criteria, were enrolled, together with a disease-control group of 28 consecutive patients with rheumatoid arthritis (RA). Health Assessment Questionnaire (HAQ-DI) and Short Form 36 (SF36), physical component summary (PCS) and mental component summary (MCS) scales were used to assess HRQoL, and the following ten clinical variables were considered for correlation: time since disease onset (first non-raynaud’s phenomenon manifestation), modified Rodnan skin score, calcinosis, digital ulcers (DU), arthritis/myositis, clinically significant pulmonary hypertension (PH), interstitial lung disease (ILD), renal crisis, gastrointestinal (GI) and cardiac involvement. Physician’s perception of the impact in HRQoL of each of the variables was assessed – scored from 1 (high impact) to 3 (mild impact). All physicians were SSc experts non-associated to this cohort. T-test and Fisher’s exact test were used to compare binary variables. Pearson’s correlation was used for continuous variables.

Results: in SSc patients the mean HAQ-DI score was 0.95±0.67 (0-best health), and the mean PCS and MCS scores were 44.3±44.1 and 39.1±13.1 (100-best health), respectively. None of the clinical variables correlated with HRQoL, except the GI involvement (HAQ-DI – p=0.01, PCS – p=0.04, MCS – p=0.005). From the physician’s perspective, the 3 clinical variables considered as having a high impact on HRQoL were: 80% PH, 70% DU and 50% ILD. Only 40% of the physicians considered GI manifestations to have a high impact on HRQoL, whilst 20% rated it as having a mild impact. Comparing with RA patients, there was no statistically significant difference in HRQoL. RA patients had mean scores of: HAQ-DI 1.1±0.56 (p=0.41), PCS 35.0±10.0 (p=0.27) and MCS 43.7±12.2 (p=0.14).

Conclusion: SSc has a very significant impact in the quality of life as perceived by the patients. In this study, the GI involvement was the only independent clinical manifestation contributing to a poorer health status in SSc patients. Despite its proven significance, the physician’s perspective of the GI involvement is significantly different from patients reinforcing the need for further studies on patient perpective and outcomes measures in SSc.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/impact-of-the-clinical-characteristics-of-systemic-sclerosis-in-patients-quality-of-life/