SAT0278 STUDY OF QUALITY OF LIFE IN PATIENTS WITH SYSTEMIC SCLEROSIS- A CROSS-SECTIONAL STUDY

Abstract

Background: There has been no study on quality of life (QoL) in patients with systemic sclerosis (SSc) in India. Objectives: 1) To determine the difference in QoL in patients with SSc compared to general population. 2) To determine the difference in QoL in subsets of patients with SSc between a) Limited cutaneous SSc (lcSSc) and diffuse cutaneous SSc (dcSSc); b) SSc with and without interstitial lung disease (ILD) c) SSc with disease duration of ≤ 5 yrs and > 5 yrs. 3) To find out the contributing factors to impaired QoL with the help of a newly developed patient reported questionnaire. Methods: In this cross-sectional study, all consecutive adult patients with SSc, satisfying 2013 ACR/EULAR classification criteria, attending a tertiary rheumatology clinic in Western India from January 2016 to March 2017 were compared to age and sex-matched controls. A new questionnaire [Indian Systemic Sclerosis QoL questionnaire (Indian SyS-QoL)] was developed to identify the contributing factors to impaired QoL with feedback from 15 SSc patients and 11 rheumatologists. This questionnaire had 10 factors and each was scored by individual patients between 0-3 (0-no impact; 3-severe impact on QoL in previous month). Demographic data, clinical profile and relevant investigations were recorded. Patients filled Medical Outcomes Trust Short Form 36 version 2 (SF-36v2) questionnaire, Indian SyS-QoL questionnaire and Indian Health Assessment Questionnaire –(Indian HAQ). Results: 94 SSc patients (7 males; 87 females) were compared to 100 age and sex-matched controls. QoL was significantly impaired in patients with SSc compared to healthy controls in all 8 domains of SF-36 (p 5 years [51 patients (54.3%)] and in those with ILD [56 patients (59.6%)] and without ILD [38 patients (40.4%)]. Two most important factors responsible for poor QoL based on Indian SyS-QoL questionnaire score (mean±SD) were ‘feeling of dependency on family’ (1.4±1.3) and ‘cost of treatment’(1.3±1.2)(Fig 1). Conclusion: This maiden study from India showed that QoL was significantly affected in patients with SSc compared to the general population; but there was no significant difference in QoL in patients with different subsets of SSc; disease duration ≤ 5 yrs and > 5 yrs, and presence or absence of ILD. The new graded scale devised to assess the impact of SSc on QoL using a simple patient-reported questionnaire showed ‘Feeling of dependency’ and ‘cost of treatment’ as the 2 most important factors affecting QoL in Indian patients with SSc. This would help direct more resources to support the patients both mentally and financially.