Measuring and monitoring health-related quality of life responsiveness in systemic lupus erythematosus patients: current perspectives

Figures & data

Table 1 HRQoL measures used in SLE

Instruments	Total items/response option	Advantage	Disadvantage
Medical Outcome Survey Short Form-36 [SF-36]	36 Variable response options	A legacy HRQoL instruments in SLE	Less sensitive to change
Medical Outcomes Study Short Form 6D [SF-6D]	10	Provide cost utility analyses	Insensitive to changes between very poor health status
EuroQoL-5D [EQ-5D]	5 (EQ-5D-3L) (EQ-5D-5L)	International measure Routine use in administrative data collection	Lack sensitivity or fails to capture important aspects of health in SLE
Quality of Life Scale, Swedish [QOLS-S]	16 7-point Likert scale	Domains come from qualitative descriptions	No responsiveness data in SLE
The National Institutes of Health Initiative Patient-Reported Outcomes Measurement Information System [PROMIS]	Each question has five response options ranging in value from 1 to 5	Allows for increased power and reduced sample size	Large ceiling effects
Systemic lupus erythematosus Symptom Checklist [SSC]	38 Y/N – presence of symptoms 4-point Likert scale	Counts disease symptoms and grades the burden per symptom	No studies in patients with more severe disease phenotypes
Systemic Lupus Erythematosus-Specific Quality-of-Life [SLEQoL]	40 7-point Likert scale	Responsive with adequate MID	Moderate reliability for the individual domains
Lupus Quality of Life [LupusQoL]	34 5-point Likert scale	Appropriate for the US and Spanish populations	? Response shift bias
SLE Quality of Life [L-QoL]	25 Dichotomous response	Unidimensional based on the needs-based model of quality of life	No responsiveness data in SLE
LupusPRO	43 5-point Likert scale	Responsive to disease activity	No longitudinal data on specific organ disease state

Abbreviations: HRQoL, health related quality of life; MID, minimally important difference; SLE, systemic lupus erythematosus.