Table 1.
Summary of commonly used SLE PROs and characteristics of the SSD and SIQ
| PRO | Concept measured | Intended use | Content | Recall period |
|---|---|---|---|---|
| SF-36a [11] | HRQoL | General population surveys and clinical trials to estimate disease burden and compare disease-specific benchmarks with general population norms | Generic measure of physical and mental functioning with 36 items contributing to 8 subscales: physical functioning, role-physical, bodily pain, general health, vitality, social functioning, role-emotional, and mental health | Standard version: 4 weeks; acute version: 1 week |
| LupusQoL [16] | HRQoL | Adults with SLE in clinical trials and clinical practice | 34 items in 8 domains: physical health, pain, planning, body image, burden to others, intimate relationships, emotional health, and fatigue | 4 weeks |
| LupusPRO [17] | HRQoL | US patients with SLE in clinical trials and clinical practice | 30 items in 8 HRQoL domains: lupus symptoms, lupus medications, cognition, procreation, physical health, emotional health, pain-vitality and body image. 13 items in 3 non-HRQoL domains: desires goals, available social support and coping and satisfaction with medical care | 4 weeks |
| L-QoL [29, 32] | HRQoL, impacts | Patients with SLE in clinical trials and clinical practice | 25 items investigating fatigue and impacts including daily activities, emotional/psychological, social functioning, and relationships | At the moment |
| SLEQOL [33] | HRQoL | Patients with SLE in clinical trials and clinical practice | 40 items in 6 subsections: physical functioning, activities, symptoms, treatment, mood and self-image | 1 week |
| SSC [21] | Symptoms | Patients with SLE in clinical trials and clinical practice | 38 items measuring disease-related and treatment-related symptoms and their burden | 1 month |
| SLAQb [19] | Symptoms | Tracking and screening of patients with SLE in epidemiologic studies | 24 items measuring symptoms of disease activity | 3 months |
| Lup-QOL [32, 33] | HRQoL | Patients with SLE in clinical trials and clinical practice | Incorporates the Medical Outcomes Study SF-36 and FACIT-Fatigue. Includes 19 items with generic and disease-specific components including symptoms and interference, cognitive and confidence and planning | Varies according to the item |
| SSD | Symptoms | Patients with SLE in clinical trials and practice | 17 items measuring SLE symptoms (including: energy/vitality, joint or muscle pain/stiffness/swelling, cognition and skin symptoms), and current steroid dose | 1 day |
| SIQ | Impact | Patients with SLE in clinical trials and practice | 50 items measuring SLE impacts including daily activities; social, physical and emotional functioning; and work productivity | 7 days |
aWith the exception of the SF-36 and Lup-QOL, all other measures utilized input from patients with SLE in their development; bSLAQ is the only screener developed for use in the US with English-speaking patients
L-QoL Systemic Lupus Erythematosus Quality of Life Questionnaire, Lup-QOL Lupus-Quality of Life, PRO patient-reported outcome, SF-36 Short Form-36, SIQ SLE Impact Questionnaire, SLAQ Systemic Lupus Activity Questionnaire, SLE systemic lupus erythematosus, SLEQOL Systemic Lupus Erythematosus Quality of life Instrument, SSC SLE Symptom Checklist, SSD Symptom Severity Diary