Rheumatology International

, Volume 39, Issue 3, pp 533–539 | Cite as

Self-reported disease severity in women with systemic lupus erythematosus

  • A. DimaEmail author
  • S. Caraiola
  • C. Delcea
  • R. A. Ionescu
  • C. Jurcut
  • C. Badea
Patient Opinion


Systemic lupus erythematosus (SLE), pathology with net feminine predominance, is one of the most complex autoimmune diseases and has major impact on patients’ life. The aim is to identify patient and disease-related factors associated with self-perceived disease severity in female SLE patients. This cross-sectional study enrolled 73 women fulfilling the 2012 Systemic Lupus International Collaborating Clinic (SLICC) criteria. SLE disease activity was assessed by the Systemic Lupus Activity Measure (SLAM) score and overall damage by the SLICC/American College of Rheumatology (ACR) index. Patients’ general characteristics, associated conditions as well as SLE specific clinical involvements and therapeutic principles were also noted. Fatigue was assessed by FACIT-fatigue scale. Self-perceived disease severity was assessed using numerical rating scales (1–10 NRSs), to evaluate the disease severity at inclusion (1–10 NRS now) and worst severity anytime during disease history (1–10 NRS worst ever). In regard to worst ever lupus severity, 54.8% of patients responded with 9 or 10, while none with 1 or 2 even if only 22.9% of the patients responded with 7 or more for disease severity at inclusion (1–10 NRS now). Women with higher 1–10 NRS now answers had also higher 1–10 NRS worst ever, SLAM, SLICC, and FACIT-fatigue scores. They associated more frequently anxiety/depression diagnosis, antiphospholipid syndrome, joint involvement as well as treatments with corticosteroids. Self-reported disease severity worst ever, anxiety/depression diagnosis, fatigue, and the daily dose of corticosteroids were independently associated with patients’ perception on lupus severity at inclusion: OR (95% CI), 2.13 (1.15–3.94) p = 0.017, 6.67 (1.11–39.97) p = 0.038, 1.10 (1.02–1.19) p = 0.018, and 1.11 (1.02–1.21) p = 0.020, respectively. The vast majority of patients identified severe and very severe events during their disease history, results that raise awareness of burden concerning lupus occurrence in women’s life. Self-perceived lupus severity is multifactorial, influenced also by factors less considered in the SLE management like fatigue and the depression/anxiety disorders, but also by the previous patient’s experience.


Systemic lupus erythematosus Fatigue Women’s health Self-rated health Disease activity 


Author contributions

AD proposed and conceived the research. All authors contributed equal to data processing and to the article draft. All authors approved the final version and the manuscript submission.


No specific grant from any public or commercial agency was received for this study. AD benefited from a posdru scholarship throughout the duration of the data collection for this study.

Compliance with ethical standards

Conflict of interest

All authors declare that there is no direct conflict of interest regarding this research. Author AD declares that she has no conflict of interest. Author SC has received a speaker honorarium from Roche and UCB Pharma. Author CD declares that she has no conflict of interest. Author RI has received a speaker honorarium from MSD, Novartis, and Pfizer. Author CJ has received a speaker honorarium from Astra Zeneca, Boehringer Ingelheim, and Bayer. Author CB declares that she has no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Availability of data and materials

Data used to support the findings of this study are included within the article. Any other additional data are available from the corresponding author upon request.

Supplementary material

296_2018_4203_MOESM1_ESM.doc (36 kb)
Supplementary material 1 (DOC 36 KB)


  1. 1.
    Fatoye F, Gebrye T, Svenson LW (2018) Real-world incidence and prevalence of systemic lupus erythematosus in Alberta, Canada. Rheumatol Int 38(9):1721–1726CrossRefGoogle Scholar
  2. 2.
    Mahieu M, Yount S, Ramsey-Goldman R (2016) Patient-reported outcomes in systemic lupus erythematosus. Rheum Dis Clin North Am 42(2):253–263CrossRefGoogle Scholar
  3. 3.
    Kiani AN, Strand V, Fang H, Jaranilla J, Petri M (2013) Predictors of self-reported health-related quality of life in systemic lupus erythematosus. Rheumatology 52(9):1651–1657CrossRefGoogle Scholar
  4. 4.
    Björk M, Dahlström Ö, Wetterö J, Sjöwall C (2015) Quality of life and acquired organ damage are intimately related to activity limitations in patients with systemic lupus erythematosus. BMC Musculoskelet Disord 16(1):188CrossRefGoogle Scholar
  5. 5.
    Boomsma MM, Bijl M, Stegeman CA, Kallenberg CGM, Hoffman GS, Tervaert JWC (2002) Patients’ perceptions of the effects of systemic lupus erythematosus on health, function, income, and interpersonal relationships: a comparison with Wegener’s granulomatosis. Arthritis Rheum 47(2):196–201CrossRefGoogle Scholar
  6. 6.
    Castrejón I, Yazici Y, Samuels J, Luta G, Pincus T (2014) Discordance of global estimates by patients and their physicians in usual care of many rheumatic diseases: association with 5 scores on a Multidimensional Health Assessment Questionnaire (MDHAQ) that are not found on the Health Assessment Questionnaire (HAQ). Arthritis Care Res (Hoboken) 66(6):934–942CrossRefGoogle Scholar
  7. 7.
    Leong KP, Chong EYY, Kong KO, Chan SP, Thong BYH, Lian TY et al (2010) Discordant assessment of lupus activity between patients and their physicians: the Singapore experience. Lupus 19(1):100–106CrossRefGoogle Scholar
  8. 8.
    Jolly M, Kosinski M, Garris CP, Oglesby AK (2016) Prospective validation of the lupus impact tracker: a patient-completed tool for clinical practice to evaluate the impact of systemic lupus erythematosus. Arthritis Rheumatol 68(6):1422–1431CrossRefGoogle Scholar
  9. 9.
    Stoll T, Sutcliffe N, Mach J, Klaghofer R, Isenberg DA (2004) Analysis of the relationship between disease activity and damage in patients with systemic lupus erythematosus–a 5-yr prospective study. Rheumatology 43(8):1039–1044CrossRefGoogle Scholar
  10. 10.
    Larsen JL, Hall EOC, Jacobsen S, Birkelund R (2018) The existential experience of everyday life with systemic lupus erythematosus. J Adv Nurs 74(5):1170–1179CrossRefGoogle Scholar
  11. 11.
    Palominos PE, Gasparin AA, de Andrade NPB, Xavier RM, da Silva Chakr RM, Igansi F et al (2018) Fears and beliefs of people living with rheumatoid arthritis: a systematic literature review. Adv Rheumatol 58(1):1CrossRefGoogle Scholar
  12. 12.
    Phuti A, Schneider M, Tikly M, Hodkinson B (2018) Living with systemic lupus erythematosus in the developing world. Rheumatol Int 38(9):1601–1613CrossRefGoogle Scholar
  13. 13.
    Hjermstad MJ, Fayers PM, Haugen DF, Caraceni A, Hanks GW, Loge JH et al (2011) Studies comparing numerical rating scales, verbal rating scales, and visual analogue scales for assessment of pain intensity in adults: a systematic literature review. J Pain Symptom Manage 41:1073–1093CrossRefGoogle Scholar
  14. 14.
    Chien C-W, Bagraith KS, Khan A, Deen M, Strong J (2013) Comparative responsiveness of verbal and numerical rating scales to measure pain intensity in patients with chronic pain. J Pain 14(12):1653–1662CrossRefGoogle Scholar
  15. 15.
    Petri M, Orbai AM, Alarcon GS, Gordon C, Merrill JT, Fortin PR et al (2012) Derivation and validation of the systemic lupus international collaborating clinics classification criteria for systemic lupus erythematosus. Arthritis Rheum 64(8):2677–2686CrossRefGoogle Scholar
  16. 16.
    Bertoli AM, Alarcón GS, McGwin G, Fernández M, Bastian HM, Fessler BJ et al (2006) Systemic lupus erythematosus in a multiethnic US cohort (LUMINA) XXVII: factors predictive of a decline to low levels of disease activity. Lupus 15(1):13–18CrossRefGoogle Scholar
  17. 17.
    Gladman D, Ginzler E, Goldsmith C, Fortin P, Liang M, Urowitz M et al (1996) The development and initial validation of the Systemic Lupus International Collaborating Clinics/American College of Rheumatology damage index for systemic lupus erythematosus. Arthritis Rheum 39(3):363–369CrossRefGoogle Scholar
  18. 18.
    Kosinski M, Gajria K, Fernandes A, Cella D (2013) Qualitative validation of the FACIT-Fatigue scale in systemic lupus erythematosus. Lupus 22(5):422–430CrossRefGoogle Scholar
  19. 19.
    Mikdashi J, Nived O (2015) Measuring disease activity in adults with systemic lupus erythematosus: the challenges of administrative burden and responsiveness to patient concerns in clinical research. Arthritis Res Ther 17(1):183CrossRefGoogle Scholar
  20. 20.
    Schneider M, Mosca M, Pego-Reigosa JM, Hachulla E, Teh L-S, Perna A et al (2015) Understanding remission in real-world lupus patients across five European countries. Lupus 25(5):505–512CrossRefGoogle Scholar
  21. 21.
    Wang S, Hsieh E, Zhu L, Wu B, Lu L (2015) Comparative assessment of different health utility measures in systemic lupus erythematosus. Sci Rep 5:13297CrossRefGoogle Scholar
  22. 22.
    Georgopoulou S, Prothero L, D’Cruz DP (2018) Physician–patient communication in rheumatology: a systematic review. Rheumatol Int 38(5):763–775CrossRefGoogle Scholar
  23. 23.
    Nowicka-Sauer K, Pietrzykowska M, Banaszkiewicz D, Hajduk A, Czuszyńska Z, Smoleńska Ż (2016) How do patients and doctors-to-be perceive systemic lupus erythematosus? Rheumatol Int 36(5):725–729CrossRefGoogle Scholar
  24. 24.
    Neville C, Clarke AE, Joseph L, Belisle P, Ferland D, Fortin PR (2000) Learning from discordance in patient and physician global assessments of systemic lupus erythematosus disease activity. J Rheumatol 27:675–679Google Scholar
  25. 25.
    Ng X, dosReis S, Beardsley R, Magder L, Mullins CD, Petri M (2018) Understanding systemic lupus erythematosus patients’ desired outcomes and their perceptions of the risks and benefits of using corticosteroids. Lupus 27(3):475–483CrossRefGoogle Scholar
  26. 26.
    Serrano-Aguilar P, Trujillo-Martin M, del M, Perez, de la Rosa A, Cuellar-Pompa L, Saavedra-Medina H, Linertova R et al (2015) Patient participation in a clinical guideline development for systemic lupus erythematosus. Patient Educ Couns 98(9):1156–1163CrossRefGoogle Scholar
  27. 27.
    Pettersson S, Lövgren M, Eriksson LE, Moberg C, Svenungsson E, Gunnarsson I et al (2012) An exploration of patient-reported symptoms in systemic lupus erythematosus and the relationship to health-related quality of life. Scand J Rheumatol 41(5):383–390CrossRefGoogle Scholar
  28. 28.
    Fonseca R, Bernardes M, Terroso G, De Sousa M, Figueiredo-Braga M (2014) Silent burdens in disease: fatigue and depression in SLE. Autoimmune Dis 2014:790724Google Scholar
  29. 29.
    Burgos PI, Alarcón GS, McGwin G, Crews KQ, Reveille JD, Vilá LM (2009) Disease activity and damage are not associated with increased levels of fatigue in systemic lupus erythematosus patients from a multiethnic cohort: LXVII. Arthritis Rheum 61(9):1179–1186CrossRefGoogle Scholar
  30. 30.
    Barbasio C, Vagelli R, Marengo D, Querci F, Settanni M, Tani C et al (2015) Illness perception in systemic lupus erythematosus patients: The roles of alexithymia and depression. Compr Psychiatry 63:88–95CrossRefGoogle Scholar
  31. 31.
    Kwan A, Katz P, Touma Z (2018) The assessment of anxiety and depression and its associated factors in systemic lupus erythematosus. Curr Rheumatol Rev. Google Scholar
  32. 32.
    Lemaire B, Geron D, Malaise O, Krzesinski JM, Ansseau M, Scantamburlo G (2015) Depression as a common complication of systemic lupus erythematosus. Rev médicale Liège 70:215–218Google Scholar
  33. 33.
    Braga J, Campar A (2014) Biological causes of depression in systemic lupus. Erythematosus Acta Reum Port 39:218–226Google Scholar
  34. 34.
    Huang X, Magder LS, Petri M (2014) Predictors of incident depression in systemic lupus erythematosus. J Rheumatol 41:1823–1833CrossRefGoogle Scholar
  35. 35.
    Fraenkel L, Bogardus S, Concato J (2002) Patient preferences for treatment of lupus nephritis. Arthritis Rheum 47(4):421–428CrossRefGoogle Scholar
  36. 36.
    Bexelius C, Wachtmeister K, Skare P, Jönsson L, Vollenhoven R van (2013) Drivers of cost and health-related quality of life in patients with systemic lupus erythematosus (SLE): a Swedish nationwide study based on patient reports. Lupus 22(8):793–801CrossRefGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Internal Medicine DepartmentCarol Davila UMFBucharest S2Romania
  2. 2.Internal Medicine DepartmentColentina Clinical HospitalBucharestRomania
  3. 3.Dr Carol Davila Central University Emergency Military HospitalBucharestRomania

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