Patient experience in systemic lupus erythematosus: development of novel patient-reported symptom and patient-reported impact measures

Mathias, S. D.; Berry, P.; De Vries, J.; Pascoe, K.; Colwell, H. H.; Chang, D. J.; Askanase, A. D.

doi:10.1186/s41687-018-0028-7

Journal of Patient-Reported Outcomes

Table 1 Summary of commonly used SLE PROs and characteristics of the SSD and SIQ

From: Patient experience in systemic lupus erythematosus: development of novel patient-reported symptom and patient-reported impact measures

PRO	Concept measured	Intended use	Content	Recall period
SF-36^a [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
SLAQ^b [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

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