Restricted accessResearch articleFirst published online 2024-10
Factors affecting discrepancies in disease activity evaluation between patients and physicians in systemic lupus erythematosus-The importance of symptoms such as fatigue
There are often discrepancies in the evaluation of disease activity between patients and physicians in systemic lupus erythematosus (SLE). In this study, we examined the factors that affect those evaluations.
Methods
Physician visual analogue scale (Ph-VAS), patient VAS (Pt-VAS), Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2k), glucocorticoid (GC) usage and dose, age, Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index, and three patient-reported outcomes (SLE symptom checklist [SSC], short-form 36 questionnaire [SF-36], and LupusPRO) were obtained from a study performed in 2019 using 225 SLE outpatients of the Kyoto Lupus Cohort at Kyoto University Hospital. Correlations among Ph-VAS, Pt-VAS, or dif (Pt-VAS-Ph-VAS) (Pt-VAS minus Ph-VAS) and other factors were examined.
Results
We found a significant discrepancy between Pt-VAS (median 38.0 mm) and Ph-VAS (median 18.7 mm) scores (p < 0.001). SSC score showed a significant correlation with Pt-VAS and dif (Pt-VAS-Ph-VAS) (p < 0.001). Among SSC items, fatigue showed the most significant correlation with dif (Pt-VAS-Ph-VAS). We also showed that higher dif (Pt-VAS-Ph-VAS) was associated with lower quality of life (QOL) evaluated by SF-36 and LupusPRO.
Conclusions
Pt-VAS scores tended to be higher than Ph-VAS scores, and the discrepancy was influenced mainly by fatigue. Higher dif (Pt-VAS-Ph-VAS) was associated with lower patient QOL.
TektonidouMGLewandowskiLBHuJ, et al.Survival in adults and children with systemic lupus erythematosus: a systematic review and Bayesian meta-analysis of studies from 1950 to 2016. Ann Rheum Dis2017; 76(12): 2009–2016.
2.
DhaonPDasSKSrivastavaR, et al.Performances of clinical disease activity index (CDAI) and simplified disease activity index (SDAI) appear to be better than the gold standard disease assessment score (DAS-28-CRP) to assess rheumatoid arthritis patients. Int J Rheum Dis2018; 21(11): 1933–1939.
3.
StudenicPRadnerHSmolenJS, et al.Discrepancies between patients and physicians in their perceptions of rheumatoid arthritis disease activity. Arthritis Rheum2012; 64(9): 2814.
4.
FuruMHashimotoMItoH, et al.Discordance and accordance between patient's and physician's assessments in rheumatoid arthritis. Scand J Rheumatol2014; 43(4): 291–295.
5.
Elera-FitzcarraldCVegaKGamboa-CárdenasRV, et al.Discrepant perception of lupus disease activity: a comparison between patients’ and physicians’ disease activity scores. Clin Rheumatol2020; 26(7S, Suppl. 2): S165–S169.
6.
AlarcónGSMcGwinGJrBrooksK, et al.Systemic lupus erythematosus in three ethnic groups. XI. Sources of discrepancy in perception of disease activity: a comparison of physician and patient visual analog scale scores. Arthritis Rheum2002; 47: 408–413.
7.
NevilleCClarkeAEJosephL, et al.Learning from discordance in patient and physician global assessments of systemic lupus erythematosus disease activity. J Rheumatol2000; 27(3): 675–679.
8.
HochbergMC. Updating the American College of Rheumatology revised criteria for the classification of systemic lupus erythematosus. Arthritis Rheum1997; 40(9): 1725.
9.
PetriMOrbaiAMAlarconGS, et al.Derivation and validation of the Systemic Lupus International Collaborating Clinics classification criteria for systemic lupus erythematosus. Arthritis Rheum2012; 64(8): 2677.
10.
FukuharaSBitoSGreenJ, et al.Translation, adaptation, and validation of the SF-36 Health Survey for use in Japan. J Clin Epidemiol1998; 51(11): 1037–1044.
11.
FukuharaSWareJEJr.KosinskiM, et al.Psychometric and clinical tests of validity of the Japanese SF-36 Health Survey. J Clin Epidemiol1998; 51(11): 1045–1053.
12.
JollyMPickardASBlockJA, et al.Disease-specific patient reported outcome tools for systemic lupus erythematosus. Semin Arthritis Rheum2012; 42: 56–65.
13.
InoueMShiozawaKYoshiharaR, et al.The Japanese LupusPRO: a cross-cultural validation of an outcome measure for lupus. Lupus2017; 26(8): 849–856.
14.
GrootscholtenCLigtenbergGDerksenRH, et al.Health-related quality of life in patients with systemic lupus erythematosus: development and validation of a lupus specific symptom checklist. Qual Life Res2003; 12(6): 635–644.
15.
DoiHOhmuraKTabuchiY, et al.Validation and verification of the Japanese version of the systemic lupus erythematosus symptom checklist for patient quality of life. Lupus2021; 30(7), in press.
GladmanDGinzlerEGoldsmithC, et al.The development and initial validation of the Systemic Lupus International Collaborating Clinics/American College of Rheumatology damage index for systemic lupus erythematosus. Arthritis Rheum1996; 39(3): 363–369.
18.
PetriMKimMYKalunianKC, et al.Combined oral contraceptives in women with systemic lupus erythematosus. N Engl J Med2005; 353: 2550–2558.
19.
BlandJMAltmanDG. Measuring agreement in method comparison studies. Stat Methods Med Res1999; 8(2): 135–160.
20.
FranklynKLauCSNavarraSV, et al.Definition and initial validation of a lupus low disease activity state (LLDAS). Ann Rheum Dis2016; 75: 1615–1621.
21.
AzizoddinDRGandhiNWeinbergS, et al.Fatigue in systemic lupus: the role of disease activity and its correlates. Lupus2019; 28(2): 163–173.
22.
ArnaudLGavandPEVollR, et al.Predictors of fatigue and severe fatigue in a large international cohort of patients with systemic lupus erythematosus and a systematic review of the literature. Rheumatology2019; 58(6): 987–989.
23.
HayEMBaconPAGordonC, et al.The BILAG index: a reliable and valid instrument for measuring clinical disease activity in systemic lupus erythematosus. Q J Med1993; 86(7): 447–458.
24.
IsenbergDARahmanAAllenE, et al.BILAG 2004. Development and initial validation of an updated version of the British Isles Lupus Assessment Group's disease activity index for patients with systemic lupus erythematosus. Rheumatology2005;44(7):902-906.
25.
LiangMHSocherSALarsonMG, et al.Reliability and validity of six systems for the clinical assessment of disease activity in systemic lupus erythematosus. Arthritis Rheum1989; 32(9): 1107–1118.
26.
MoscaMBencivelliWVitaliC, et al.The validity of the ECLAM index for the retrospective evaluation of disease activity in systemic lupus erythematosus. Lupus2000; 9(6): 445–450.
27.
StrandVBerryPLinX, et al.Long-term impact of belimumab on health-related quality of life and fatigue in patients with systemic lupus erythematosus: six years of treatment. Arthritis Care Res; 71(6): 829–838.
28.
StullDEO’QuinnSWilliamsB, et al.Causal cascade of direct and indirect effects of anifrolumab on patient-reported outcomes: structural equation modelling of two Phase 3 trials. Rheumatology2022; 61(12): 4731–4740.
29.
KatzPPAndrewsJYazdanyJ, et al.Is concept in SLE?Lupus Sci Med2017; 4(1): e000186.
30.
ToriiMHashimotoMHanaiA, et al.Prevalence and factors associated with sarcopenia in patients with rheumatoid arthritis. Mod Rheumatol2019; 29(4): 589–595.
31.
PalaginiLMoscaMTaniC, et al.Depression and systemic lupus erythematosus: a systematic review. Lupus2013; 22: 409–416.
32.
GodsellJRudloffIKandane-RathnayakeR, et al.Clinical associations of IL-10 and IL-37 in systemic lupus erythematosus. Sci Rep2016; 6: 34604.
33.
BarnesJMondelliVParianteCM. Genetic contributions of inflammation to depression. Neuropsychopharmacology2017; 42(1): 81–98.
34.
Figueiredo-BragaMCornabyCCortezA, et al.Influence of biological therapeutics, cytokines, and disease activity on depression in rheumatoid arthritis. J Immunol Res2018; 2018: 5954897.
35.
BombardierCGladmanDDUrowitzMB, et al.Derivation of the SLEDAI. A disease activity index for lupus patients. The Committee on Prognosis Studies in SLE. Arthritis Rheum1992; 35(6): 630–640.
36.
KarlsonEDaltroyLRivestC, et al.Validation of a systemic lupus activity questionnaire (SLAQ) for population studies. Lupus2003; 12: 280–286.
37.
FariaRAlvesROliveiraDG, et al.Validation of a disease-specific health-related quality of life measure in adult Portuguese patients with systemic lupus erythematosus: LupusQoL-PT. ARP Rheumatol2022; 1: 210–218.
38.
QuimbyKRFlowerCHambletonIR, et al.Comparison of the systemic lupus erythematosus activity questionnaire and the systemic lupus erythematosus disease activity index in a black barbadian population. Internet J Rheumatol2013; 2013: 875369.
39.
RibiCTrendelenburgMGayet-AgeronA, et al.The Swiss Systemic lupus erythematosus Cohort Study (SSCS) - cross-sectional analysis of clinical characteristics and treatments across different medical disciplines in Switzerland. Swiss Med Wkly2014; 144: w13990. DOI: 10.4414/smw.2014.13990.
40.
MokCCHoLYLeungHW, et al.Performance of anti-C1q, antinucleosome, and anti-dsDNA antibodies for detecting concurrent disease activity of systemic lupus erythematosus. Transl Res2010; 156(6): 320–325. DOI: 10.1016/j.trsl.2010.07.009.
41.
GolderVOoiJJYAntonyAS, et al.Discordance of patient and physician health status concerns in systemic lupus erythematosus. Lupus2018; 27(3): 501–506.
42.
ChaigneBChizzoliniCPernegerT, et al.Impact of disease activity on health-related quality of life in systemic lupus erythematosus - a cross-sectional analysis of the Swiss Systemic Lupus Erythematosus Cohort Study (SSCS). BMC Immunol2017; 18(1): 17. DOI: 10.1186/s12865-017-0200-5.
43.
ShiYLiMLiuL, et al.Relationship between disease activity, organ damage and health-related quality of life in patients with systemic lupus erythematosus: a systemic review and meta-analysis. Autoimmun Rev2021; 20(1): 102691.
44.
AzizoddinDRWeinbergSGandhiN, et al.Validation of the LupusPRO version 1.8: an update to a disease-specific patient-reported outcome tool for systemic lupus erythematosus. Lupus2018; 27(5): 728–737.
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