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Quality Of Life Assessments in SLE

Systemic lupus erythematosus (SLE) is a complex, multisystem, auto-immune disease with wide-ranging effects on physical, psychological and social well-being. As such, a comprehensive assessment of SLE should include several different outcomes:
1. Activity
2. Damage
3. Quality of Life

In fact, to patients the effects of SLE disease on QoL are often considered of greater overall importance.

There are two approaches which are commonly used in the measurement of health related quality of life (HRQoL) assessments:
(a) Generic questionnaires
(b) Lupus Specific questionnaires

Generic questionnaires

Generic questionnaires are designed to be used across various conditions and populations
The most commonly used measure of QoL is the Medical Outcomes Study Short Form 36 (SF-36), which is a generic measure that is applicable in a variety of conditions, including SLE. SF-36 is available in BLIPS in electronic format, but it must be licenced from Medical Outcomes Trust. Please be clear about which version you intend to use, and for how many patients, when licencing and and also specifying in BLIPS.
The European QoL scale (EQ-5D) is an alternative and  simpler generic questionnaire which measures 5 Dimensions of health quality :
mobility, selfcare, usual activities, pain & discomfort, and anxiety & depression. EQ5D is also available in BLIPS.

Disease Specific Questionnaires

Disease-specific questionnaires are designed to measure outcomes specifically in SLE
The most popular, and often used in SLE clinical trials is LupusQOL. Similarly structured to SF-36. LupusQOL uses a 34-item questionnaire that assesses eight domains: physical functioning, pain, emotional functioning, fatigue, body image, sex, planning, burden to others.
It possesses internal consistency, test & retest reliability, and concurrent validity when compared with the SF-36. LupusQOL is available electronically in BLIPS and is free to use for patient care in clinics, however it must be licenced from Corporate Translations for commercial use in clinical trials.

Other SLE specific QOL questionnaires are available, but have not as been requested in BLIPS. These include SLE System Checklist (SSC) and SLEQOL. SSC is a sympton scale, and the authors concede it is not a comprehensive HRQOL. SLEQOL was concieved by heath professionals without direct  input from patients, and consequently missed the important body image assessment, and is less comprehensive in physical functioning, pain and burden. 


Quality of Life in Systemic Lupus Erythematosus. Available from: https://www.researchgate.net/publication/6638135_Quality_of_Life_in_Systemic_Lupus_Erythematosus

Development and validation of a disease specific health related quality of life measure, the LupusQol. Available from: https://onlinelibrary.wiley.com/doi/abs/10.1002/art.22881
 LupusQOL in BLIPS