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

Raphaele Seror; Philippe Ravaud; Xavier Mariette; Hendrika Bootsma; Elke Theander; Arne Hansen; Manel Ramos-Casals; Thomas Doerner; Stefano Bombardieri; Eric Hachulla; Johan G. Brun; Aike A. Kruize; Sonja Praprotnik; Matija Tomsic; Jacques-Eric Gottenberg; Valerie Devauchelle; Salvatore Devita; Cristina Vollenweider; Thomas Mandl; Athanasios Tzioufas; Steven Carsons; Alain Saraux; Nurhan Sutcliffe; Claudio Vitali; Simon J. Bowman; EULAR Sjogren's Task Force

doi:10.1136/ard.2010.143743

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

Raphaele Seror^*, Philippe Ravaud, Xavier Mariette, Hendrika Bootsma, Elke Theander, Arne Hansen, Manel Ramos-Casals, Thomas Doerner, Stefano Bombardieri, Eric Hachulla, Johan G. Brun, Aike A. Kruize, Sonja Praprotnik, Matija Tomsic, Jacques-Eric Gottenberg, Valerie Devauchelle, Salvatore Devita, Cristina Vollenweider, Thomas Mandl, Athanasios TzioufasSteven Carsons, Alain Saraux, Nurhan Sutcliffe, Claudio Vitali, Simon J. Bowman, EULAR Sjogren's Task Force

^*Corresponding author for this work

Translational Immunology Groningen (TRIGR)

Research output: Contribution to journal › Article › Academic › peer-review

434 Citations (Scopus)

Abstract

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

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.

Original language	English
Pages (from-to)	968-972
Number of pages	5
Journal	Annals of the Rheumatic Diseases
Volume	70
Issue number	6
DOIs	https://doi.org/10.1136/ard.2010.143743
Publication status	Published - Jun-2011

Keywords

PLACEBO-CONTROLLED TRIAL
PRIMARY SJGRENS-SYNDROME
RITUXIMAB TREATMENT
DISEASE-ACTIVITY
DOUBLE-BLIND
SYMPTOMS INVENTORY
CLINICAL-TRIALS
DAMAGE INDEX
DRY MOUTH
VALIDATION

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Seror, R., Ravaud, P., Mariette, X., Bootsma, H., Theander, E., Hansen, A., Ramos-Casals, M., Doerner, T., Bombardieri, S., Hachulla, E., Brun, J. G., Kruize, A. A., Praprotnik, S., Tomsic, M., Gottenberg, J.-E., Devauchelle, V., Devita, S., Vollenweider, C., Mandl, T., ... EULAR Sjogren's Task Force (2011). EULAR Sjogren's Syndrome Patient Reported Index (ESSPRI): development of a consensus patient index for primary Sjogren's syndrome. Annals of the Rheumatic Diseases, 70(6), 968-972. https://doi.org/10.1136/ard.2010.143743

@article{dded2c7586c246118d9e6363c212db63,

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

abstract = "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 pConclusion 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.",

keywords = "PLACEBO-CONTROLLED TRIAL, PRIMARY SJGRENS-SYNDROME, RITUXIMAB TREATMENT, DISEASE-ACTIVITY, DOUBLE-BLIND, SYMPTOMS INVENTORY, CLINICAL-TRIALS, DAMAGE INDEX, DRY MOUTH, VALIDATION",

author = "Raphaele Seror and Philippe Ravaud and Xavier Mariette and Hendrika Bootsma and Elke Theander and Arne Hansen and Manel Ramos-Casals and Thomas Doerner and Stefano Bombardieri and Eric Hachulla and Brun, {Johan G.} and Kruize, {Aike A.} and Sonja Praprotnik and Matija Tomsic and Jacques-Eric Gottenberg and Valerie Devauchelle and Salvatore Devita and Cristina Vollenweider and Thomas Mandl and Athanasios Tzioufas and Steven Carsons and Alain Saraux and Nurhan Sutcliffe and Claudio Vitali and Bowman, {Simon J.} and {EULAR Sjogren's Task Force}",

year = "2011",

month = jun,

doi = "10.1136/ard.2010.143743",

language = "English",

volume = "70",

pages = "968--972",

journal = "Annals of the Rheumatic Diseases",

issn = "0003-4967",

publisher = "BMJ Publishing Group",

number = "6",

}

Seror, R, Ravaud, P, Mariette, X, Bootsma, H, Theander, E, Hansen, A, Ramos-Casals, M, Doerner, T, Bombardieri, S, Hachulla, E, Brun, JG, Kruize, AA, Praprotnik, S, Tomsic, M, Gottenberg, J-E, Devauchelle, V, Devita, S, Vollenweider, C, Mandl, T, Tzioufas, A, Carsons, S, Saraux, A, Sutcliffe, N, Vitali, C, Bowman, SJ & EULAR Sjogren's Task Force 2011, 'EULAR Sjogren's Syndrome Patient Reported Index (ESSPRI): development of a consensus patient index for primary Sjogren's syndrome', Annals of the Rheumatic Diseases, vol. 70, no. 6, pp. 968-972. https://doi.org/10.1136/ard.2010.143743

TY - JOUR

T1 - EULAR Sjogren's Syndrome Patient Reported Index (ESSPRI)

T2 - development of a consensus patient index for primary Sjogren's syndrome

AU - Seror, Raphaele

AU - Ravaud, Philippe

AU - Mariette, Xavier

AU - Bootsma, Hendrika

AU - Theander, Elke

AU - Hansen, Arne

AU - Ramos-Casals, Manel

AU - Doerner, Thomas

AU - Bombardieri, Stefano

AU - Hachulla, Eric

AU - Brun, Johan G.

AU - Kruize, Aike A.

AU - Praprotnik, Sonja

AU - Tomsic, Matija

AU - Gottenberg, Jacques-Eric

AU - Devauchelle, Valerie

AU - Devita, Salvatore

AU - Vollenweider, Cristina

AU - Mandl, Thomas

AU - Tzioufas, Athanasios

AU - Carsons, Steven

AU - Saraux, Alain

AU - Sutcliffe, Nurhan

AU - Vitali, Claudio

AU - Bowman, Simon J.

AU - EULAR Sjogren's Task Force

PY - 2011/6

Y1 - 2011/6

N2 - 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 pConclusion 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.

AB - 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 pConclusion 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.

KW - PLACEBO-CONTROLLED TRIAL

KW - PRIMARY SJGRENS-SYNDROME

KW - RITUXIMAB TREATMENT

KW - DISEASE-ACTIVITY

KW - DOUBLE-BLIND

KW - SYMPTOMS INVENTORY

KW - CLINICAL-TRIALS

KW - DAMAGE INDEX

KW - DRY MOUTH

KW - VALIDATION

U2 - 10.1136/ard.2010.143743

DO - 10.1136/ard.2010.143743

M3 - Article

SN - 0003-4967

VL - 70

SP - 968

EP - 972

JO - Annals of the Rheumatic Diseases

JF - Annals of the Rheumatic Diseases

IS - 6

ER -

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

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Keywords

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