Background/Purpose: The Medical Outcome Survey Short Form 36 (SF-36) is one of the most widely used tools for measuring patient reported outcomes. Our previous studies have shown that SF-36 improves in the first 2 years of an inception cohort and stabilizes in years 2-5 However the accrual of comorbidities in SLE increases over 8 years. The aim of this study is to assess quality of life(QoL) in a multinational multicenter cohort over years 4-10 of disease and assess the impact of comorbidities on QoL.  

Methods: An international research network comprised of 33 centres from 11 countries has followed an inception cohort of SLE patients yearly according to a standardized protocol between 2000 and 2016. Clinical and laboratory features of SLE, comorbidities, and SF-36 are gathered in a standardized protocol annually. Comorbidities including atherosclerotic vascular events (AVEs), osteoporosis, osteonecrosis and diabetes are assessed using the SLICC/ACR Damage Index (SLICC/DI). Attribution of a vascular event to atherosclerosis (AS) is made on the basis of lupus disease being inactive at the time of the event, and/or the presence of typical AS changes on imaging or pathology and/or evidence of AS elsewhere. Diagnosis of osteoporosis is based on abnormal bone mineral density and osteonecrosis was confirmed using joint symptoms associated with abnormal imaging consistent with osteonecrosis. Diabetes diagnosis is based on therapy, regardless of treatment type. The outcomes assessed include all 8 domains, physical component scores (PSC) and mental component scores (MCS) of SF-36. In order to test for change in SF-36 over the 10-year period, linear mixed models were run separately for the composite scores. Each model adjusted for repeated measures by patients and by centre.  The impact of AVEs, osteoporosis, osteonecrosis and diabetes. on component scores was assessed using univariate and multivariate regression models  

Results: 416 patients constitute the study population, of which 88.9% female, the mean disease duration at enrolment was 5.4 ± 4.3 months and the mean age at diagnosis was 34.6 ± 13.4 years. The race/ethnicity distribution was as follows: 55.3% Caucasian, 13.9% Black, 18.3% Asian, 9.4% Hispanic and 3.1% other. No significant change in SF-36 domains or component scores over years 4-10 were seen (Table 1). However, in a multivariable linear regression the presence of osteonecrosis (PE; 95% CI) (-8.6; -16.0, -1.3) (p=0.021) and osteoporosis (-15.0; -26.0, -4.3) (p=0.006) significantly impact the mean PCS. The comorbidities did not impact the MCS  

Conclusion: In an inception cohort SF-36 QoL measures do not change significantly over years 4-10 of their disease.  However the comorbidities osteonecrosis and osteoporosis significantly impact the PCS.