title: An evaluation of health-related quality of life in patients with systemic lupus erythematosus using PROMIS and Neuro-QoL.
abstract: Systemic lupus erythematosus (SLE) is a multi-organ chronic autoimmune disease that can negatively affect patients' health-related quality of life (HRQOL). This study evaluated HRQOL of SLE patients using questionnaires from the Patient-Reported Outcomes Measurement Information System (PROMIS) and Quality of Life in Neurological Disorders (Neuro-QoL). Individuals with SLE completed an online survey consisting of the PROMIS-29 health profile, PROMIS Psychosocial Illness Impact-Negative, and Neuro-QoL Applied Cognition. PROMIS and Neuro-QoL scores have a mean of 50 in the US general population. Patients self-rated SLE disease severity as negligible, mild, moderate, or severe. Of the 333 participants (mean age 45 years; 92% female; 26% Black; mean SLE disease duration 12 years, 56% with SLE disease severity as moderate or severe), mean HRQOL scores were worse than those of the general population by ≥0.5 SD with the greatest deficits observed in the domains of fatigue, applied cognition, psychosocial illness impact-negative, pain interference, and physical function. Greater SLE disease severity was associated with worse mean HRQOL scores (all p < 0.05). Pain severity was also associated with worse HRQOL scores on all domains (p < 0.05) except for satisfaction with social role. Test-retest reliability exceeded 0.70 for all PROMIS and Neuro-QoL scores. PROMIS-29 and Neuro-QoL are valid tools to assess HRQOL in patients with SLE. These patients reported substantial deficits that correlated with their SLE disease severity, with pain being an important independent contributor. These deficits should be monitored in SLE patients during their routine clinical care and evaluated when investigating new therapies.
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 633 N St Clair, 19th Floor, Chicago, IL, 60611, USA. js-lai@northwestern.edu.
authors.forename: Jin-Shei
authors.identifier: http://orcid.org/0000-0003-1840-2537
authors.initials: JS
authors.lastname: Lai
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 633 N St Clair, 19th Floor, Chicago, IL, 60611, USA.
authors.forename: Jennifer L
authors.initials: JL
authors.lastname: Beaumont
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 633 N St Clair, 19th Floor, Chicago, IL, 60611, USA.
authors.forename: Sally E
authors.initials: SE
authors.lastname: Jensen
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 633 N St Clair, 19th Floor, Chicago, IL, 60611, USA.
authors.forename: Karen
authors.initials: K
authors.lastname: Kaiser
authors.affiliation: Biogen Idec Inc, Cambridge, MA, USA.
authors.forename: David L
authors.initials: DL
authors.lastname: Van Brunt
authors.affiliation: Biogen Idec Inc, Cambridge, MA, USA.
authors.forename: Amy H
authors.initials: AH
authors.lastname: Kao
authors.affiliation: Biogen Idec Inc, Cambridge, MA, USA.
authors.forename: Shih-Yin
authors.initials: SY
authors.lastname: Chen
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005221:Fatigue / Q000150:complications*; D005260:Female; D006304:Health Status; D006306:Health Surveys; D006801:Humans; D008180:Lupus Erythematosus, Systemic / Q000150:complications / Q000175:diagnosis*; D008297:Male; D008875:Middle Aged; D010146:Pain / Q000150:complications*; D011788:Quality of Life; D012720:Severity of Illness Index; D055815:Young Adult
keywords: Neuro-QoL; PROMIS; Patient-reported outcomes; SLE-rheumatic diseases