EULAR Sjogren's Syndrome Patient Reported Index (ESSPRI): development of a consensus patient index for primary Sjogren's syndrome

被引:398
|
作者
Seror, Raphaele [1 ,2 ,3 ]
Ravaud, Philippe [2 ,3 ]
Mariette, Xavier [1 ,4 ,5 ]
Bootsma, Hendrika [6 ]
Theander, Elke [7 ]
Hansen, Arne [8 ]
Ramos-Casals, Manel [9 ]
Doerner, Thomas [8 ]
Bombardieri, Stefano [10 ]
Hachulla, Eric [11 ]
Brun, Johan G. [12 ]
Kruize, Aike A. [13 ,14 ]
Praprotnik, Sonja [15 ]
Tomsic, Matija [15 ]
Gottenberg, Jacques-Eric [16 ]
Devauchelle, Valerie [17 ]
Devita, Salvatore [18 ]
Vollenweider, Cristina [19 ]
Mandl, Thomas [7 ]
Tzioufas, Athanasios [20 ]
Carsons, Steven [21 ]
Saraux, Alain [17 ]
Sutcliffe, Nurhan [22 ]
Vitali, Claudio [23 ,24 ]
Bowman, Simon J. [25 ]
机构
[1] Hop Bicetre, AP HP, Dept Rheumatol, INSERM,U802, F-94275 Le Kremlin Bicetre, France
[2] Ctr Clin Epidemiol, Paris, France
[3] Univ Paris 05, INSERM, U738, Paris, France
[4] Univ Paris 11, Le Kremlin Bicetre, France
[5] INSERM, U1012, F-94275 Le Kremlin Bicetre, France
[6] Univ Groningen, Univ Med Ctr Groningen, Dept Rheumatol & Clin Immunol, NL-9713 AV Groningen, Netherlands
[7] Lund Univ, Malmo Univ Hosp, Dept Rheumatol, Lund, Sweden
[8] Univ Hosp, Charite, Dept Rheumatol, Berlin, Germany
[9] Hosp Clin Barcelona, Lab Autoimmune Dis Josep Font, Barcelona, Spain
[10] Univ Pisa, Dept Internal Med, Rheumatol Unit, Pisa, Italy
[11] Claude Huriez Hosp, Dept Internal Med, Lille, France
[12] Haukeland Hosp, Dept Rheumatol, N-5021 Bergen, Norway
[13] Univ Med Ctr Utrecht, Dept Rheumatol & Clin Immunol, Utrecht, Netherlands
[14] Univ Med Ctr Utrecht, Dept Rheumatol, Utrecht, Netherlands
[15] Univ Clin Ctr Ljubljana, Dept Rheumatol, Ljubljana, Slovenia
[16] Univ Strasbourg, Strasbourg Univ Hosp, Dept Rheumatol, Strasbourg, France
[17] Hop Cavale Blanche, Dept Rheumatol, Brest, France
[18] Univ Udine, Univ Hosp Udine, Clin Rheumatol, I-33100 Udine, Italy
[19] German Hosp, Dept Rheumatol, Buenos Aires, DF, Argentina
[20] Univ Athens, Sch Med, Dept Pathophysiol, GR-11527 Athens, Greece
[21] Winthrop Univ Hosp, Div Rheumatol Allergy & Immunol, Mineola, NY 11501 USA
[22] Barts & Royal London Hosp, Dept Rheumatol, London, England
[23] Villamarina Hosp, Dept Internal Med, Piombino, Italy
[24] Villamarina Hosp, Rheumatol Sect, Piombino, Italy
[25] Univ Hosp Birmingham NHS Fdn Trust, Dept Rheumatol, Birmingham, W Midlands, England
关键词
PLACEBO-CONTROLLED TRIAL; PRIMARY SJGRENS-SYNDROME; RITUXIMAB TREATMENT; DISEASE-ACTIVITY; DOUBLE-BLIND; SYMPTOMS INVENTORY; CLINICAL-TRIALS; DAMAGE INDEX; DRY MOUTH; VALIDATION;
D O I
10.1136/ard.2010.143743
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
Objectives To develop a score for assessment of patients' symptoms in primary Sjogren's syndrome (SS): the EULAR SS Patient Reported Index (ESSPRI). Methods Dryness, pain, somatic and mental fatigue were identified as the main symptoms of patients with primary SS, in studies developing the Profile of Fatigue and Discomfort (PROFAD) and Sicca Symptoms Inventory (SSI). It was suspected that a single 0-10 numerical scale for each domain was sufficient to assess these symptoms. These four scales were gathered to form the ESSPRI. 230 patients, from 12 countries completed the ESSPRI, SSI and PROFAD questionnaires and a 0-10 patient global assessment (PGA). Correlations between each symptom and PGA were obtained. Multiple regression modelling, using PGA as 'gold standard' was used to select domains and estimate their weights. Results PGA had good correlation with dryness, limb pain, fatigue and mental fatigue (r=0.49-0.59, all p<0.0001), but correlated less well with individual dryness features. In multivariate analysis, dryness, limb pain and fatigue, but not mental fatigue, were significantly associated with PGA; weights derived from the regression were identical for these three domains. Thus, ESSPRI was redefined as the mean of the three scales: dryness, limb pain and fatigue. Lastly, ESSPRI significantly correlated with PGA (r=0.70), PROFAD (r=0.73) and SSI (r=0.66). Conclusion ESSPRI is a very simple index designed to measure patients' symptoms in primary SS. It has good construct validity and is well correlated with SSI and PROFAD. ESSPRI should now be validated for use as an outcome measure in clinical trials.
引用
收藏
页码:968 / 972
页数:5
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