Table 1.

Characteristics of disease-specific health-related quality-of-life measures in adult systemic lupus erythematosus.

Name of measure/scale	Purpose/content	Method of administration	Respondent burden	Administration burden	Interpretation of scores	Reliability evidence	Validity evidence	Ability to detect change	Strengths	Cautions
Lupus Quality of Life (LupusQoL)(9)	HRQoL measure in adult SLE 34 items across 8 domains (physical health, emotional health, body image, pain, planning, fatigue, intimate relationships, and burden to others)	Patient-completed written or electronic questionnaire	<10 minutes	<5 minutes to score	A mean raw score is transformed to scores ranging from 0 (worst HRQoL) to 100 (best HRQoL)	Good internal consistency (Cronbach’s α 0.88–0.96), good test-retest reliability (ICCs 0.72–0.93).	Content validity based on patients generating items and providing feedback, reasonable concurrent validity (with SF-36) and discriminant validity (functions independently from disease activity or damage). Limited construct validity testing (more disease activity generally associated with poorer HRQoL).	Not reported	Translations available in numerous languages, rigorous development and initial validation methods, additional psychometric testing has also been performed in the US and Spanish populations	Studies evaluating responsiveness are needed, Factor structure requires further investigation
SLE Quality of Life (SLEQoL)(6)	HRQoL measure in adult SLE 40 items across 6 domains (physical functioning, activities, symptoms, treatment, mood and self-image)	Patient-completed written questionnaire	<5 minutes	Not reported	Scores range from 40–280; higher values correspond to worse quality-of-life	Good internal consistency (Cronbach’s α 0.95 for summary score, but varied from 0.76–0.93 for domains), test-retest reliability was variable (ICC 0.83 for the summary score but 4 domains had ICC <0.6)	Content validity assessed by eliciting patient feedback for items originally developed by health professionals, low concurrent validity (with SF-36), good discriminant validity (with SLAM, SLEDAI, SDI), construct validity analysis limited (score varied with self-perceived changes in global QoL)	Multiple techniques (including SRM and RE) demonstrated better responsiveness of SLEQoL than the SF-36. MCID was calculated at approximately 25.	The only measure with published information regarding responsiveness and MCID	Reliability of the individual domains is only moderate, concurrent validity with the SF-36 is poor, and floor effects demonstrated
Lupus Quality of Life (L-QoL) (19)	Unidimensional needs-based assessment of QoL in SLE	Patient-completed written questionnaire	<5 minutes	Not reported	Score range 0–25; higher scores indicate worse QoL	Good internal consistency (Person-separation reliability 0.91–0.92), test-retest reliability was good (ICC 0.95)	Content validity based on items being derived from patient interviews, Rasch analysis employed, construct validity supported by associations with self-reported disease activity and damage in SLE as well as employment outcomes, concurrent validity with Notthingham Health Profile scores	Not reported	Provides a single unidimensional score and initial validation study demonstrates good psychometric properties	Additional validation needed, including administration to clinical cohorts with more severe disease to allow assessment of the measure’s relationship with physician assessed disease activity and damage, and evaluation of responsiveness

SLE=Systemic lupus erythematosus, HRQoL=health-related quality of life, QoL=quality-of-life, ICC=Intraclass correlations, SF-36=Medical Outcomes Study Short Form-36, SLAM=Systemic lupus erythematosus activity measure, SLEDAI=systemic lupus erythematosus disease activity index, SDI=Systemic lupus erythematosus damage index, SRM=standardized response mean, RE=relative efficacy, MCID=minimal clinically important difference.