SUPPLEMENTARY INFORMATION

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1 Supplementary Table 2. Worldwide studies of SLE costs Authors Country Study period (year(s) expenses were incurred) Chiu et al. 17 Cho et al. 172 Zhu et al. 174 Zhu et al. 173 Sutcliffe et al. 171 Doria et al. 170 Asia: Taiwan Asia: South Korea Asia: Hong Kong, Mainland China Kingdom France, Germany, Italy, 2007 Study sample size (n) Data source 22,182 Claims from national for only catastrophic illness-related costs Review of medical records for health service utilization and patient selfreport for lost productivity; from a single specialty center Self-report and medical chart review of SLE recruited from one specialty center Self-report from recruited from an SLE clinic Medical chart review of SLE recruited from Direct cost components as well as travel, dietary supplements, and home assistance as well as health products, nontraditional therapies, aid devices, transportation fees, household help, and adaptation to houses Indirect cost methodology Total direct costs per patient per year* $1,847.00, non-labour, non-labour activities, and $4, Renal involvement: $5, $9, flares: $7, With flares: $19, Total indirect costs per patient per year* $6, Renal involvement: $8, $6, flares: $5, With flares: $6, $6, $12, $5,007.00

2 Jonsen et al. 168 Bexelius et al. 169 Huscher et al. 167 Panopalis et al. 190 Clarke et al. 186 Clarke et al. 185 Spain, Kingdom Sweden Sweden Germany, Canada and the Kingdom Not specified multiple clinical cohorts 127 Review of medical charts of in a national SLE. Sick leave and information from a social 339 Self-report from enrolled in a lupus advocacy association Review of medical charts of in a national rheumatology and patient selfreport for Self-report from from six hospital-based clinical cohorts in Canada, the USA and the Kingdom plus ambulance transportation, investments in home environment and rehabilitation or visits to nursing homes, plus out of pocket expenses activities, and presenteeism HCA and FCA: Labour. The friction period was applied only to on permanent retirement for health reasons, not to those on sick leave HCA and FCA: Labour, nonlabour $5, $10, $1, $15, $17, $5, $10, $20, $4, HCA (sick leave and permanent ): $17, FCA (permanent work ): $2, US: $5, $4, Kingdom: $4, SLICC/ACR DI (SDI) renal subscale 0: $4, subscale 1: $6, subscale 2: $12, subscale 3: $24, Labour Market Activity (HCA): US: $15, $10, UK: $11, Labour activity (FCA): USA: $1, $1, UK: $1, Non-labour

3 activity (HCA): US: $1, $1, UK: $2, Li et al. 175 Carls et al ,298 Claims from (Medicaid/Medic are); 6,269 Claims from and from an employer productivity containing shortterm and time-loss information as well as home health visits Labour Year 1 SLE (year of 1 st SLE claim): $19, Year 1 $32, Year 1 controls $10, Year 5 SLE (5 consecutive years after 1 st SLE claim): $28, Year 5 Nephritis: $59, Year 5 controls $18, SLE: $23, $8, $71, $14, subscale 0: $15, subscale 1: $17, subscale 2: $16, subscale 3: $18, SLE Absenteeism : $4, Absenteeism : $4, SLE short term $2, $1, nephritis

4 Oglesby et al. 182 Campbell et al. 111 Kan et al. 178 Panopalis et al. 166 Furst et al. 180 Furst et al ,166 Claims from Self-report from enrolled in a communitybased lupus case control study Claims from ; 815 Self-report from in the Outcome Study enrolled from several clinics in the US 1,278 Claims from ; Labour Early SLE diagnosis (diagnosis within 6 months of symptom onset): $17, Late SLE diagnosis (diagnosis after 6 months of symptom onset): $22, $32, Mild flare: $19, Moderate flare: $24, Severe flare: $55, : $5, : $5, nephritis $1, $ Average salary loss per SLE patient: $6, Average salary loss per control $ $15, Productivity cost: $10, $37, $5, NPSLE

5 Garris et al. 176 Narayanan et al. 179 Kan et al. 177 Pelletier et al Aghdassi Canada et al ,990 Claims from ; 13,460 Claims from and from an employer productivity containing shortterm and time-loss information 178 Medical records and claims from enrolled in a health provider ; ,590 Claims from 141 Self-report from recruited from 5 hospital-based clinical cohorts as well as : $33, $5, Newly diagnosed: $21, Existing: $17, $16, Mild disease: $5, Moderate disease: $12, Severe disease: $40, SLE: $33, $26, $19, SLEDAI 0: $15, SLEDAI >0 2: $23, SLEDAI >2 4: $23, SLEDAI >4: $15, $14, $33, $13, Nephritis: $11, lupus $9, SLE Absenteeism : $6, SLE Short Term Disability: $6, : $3, $3,713.00

6 Clarke et Canada al Medical chart review of SLE recruited form three hospitalbased clinical cohorts nonprescription medications, assistive devices and ambulance use $9, Severe disease: $13, Mild disease: $5, With flare: $10, flare: $4, *All amounts were converted to 2015 US dollars using power purchasing parities for each non-us currency and adjusting for inflation using the US consumer price index. Power purchasing parities provide a more accurate comparison than only using exchange rates, as they also account for the general price level in different countries. In cases where the year of currency was not specified, it was assumed to be that of the last year of data collection. FCA, the friction cost approach a method to estimate indirect costs that includes only time loss in labour activities during the time it takes to replace the disabled worker (the friction period); HCA, the human capital approach a method to estimate indirect costs that includes time loss in both labour and non-labour activities for the entire duration of the impairment; SLEDAI: systemic lupus erythematosus disease activity index; SLICC/ACR DI (SDI), the Systemic International Collaborating Clinics/American College of Rheumatology Damage Index or SLICC Damage Index (SDI).