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Cecilia N Pisoni, Sebastián A Muñoz, María N Tamborenea, Mercedes García, Ana Curti, Ana Cappuccio, Oscar Rillo, Patricia M Imamura, Emilce Schneeberger, Marcela Ballent, Mario L Cousseau, Jorge Velasco Zamora, Verónica Saurit, Sergio Toloza, María C Danielsen, Verónica I Bellomio, Cesar Graf, Sergio Paira, Javier Cavallasca, Bernardo Pons Estel, José L C Moreno, Mónica Díaz, Paula Alba, Marcela Verando, Guillermo Tate, Eduardo Mysler, Judith Sarano, Emma E Civit, Fabián Risueño, Pablo Álvarez Sepúlveda, María S Larroude, Marcos F Méndez, Andrea Conforti, Débora Sohn
OBJECTIVE: To study the prevalence and the associated factors of work disability (WD) in systemic lupus erythematosus (SLE) patients. METHODS: A sample of 419 SLE patients from an observational cross-sectional multicenter study was included. Sociodemographic features, disease characteristics, comorbidities, quality of life, unhealthy behaviors, and work-related factors were measured in a standardized interview. Work disability was defined by patient self-report of not being able to work because of SLE...
April 2, 2018: International Journal of Rheumatic Diseases
Shanthini Kasturi, Jackie Szymonifka, Jayme C Burket, Jessica R Berman, Kyriakos A Kirou, Alana B Levine, Lisa R Sammaritano, Lisa A Mandl
OBJECTIVE: To assess the feasibility, validity, and reliability of the Patient Reported Outcomes Measurement Information System Global Health Short Form (PROMIS10) in outpatients with systemic lupus erythematosus (SLE). METHODS: SLE outpatients completed PROMIS10, Medical Outcomes Study Short Form-36 (SF-36), LupusQoL-US, and selected PROMIS computerized adaptive tests (CAT) at routine visits at an SLE Center of Excellence. Construct validity was evaluated by correlating PROMIS10 physical and mental health scores with PROMIS CAT, legacy instruments, and physician-derived measures of disease activity and damage...
March 2018: Journal of Rheumatology
Claudia Elera-Fitzcarrald, Magaly Alva, Rocío Gamboa-Cardenas, Claudia S Mora-Trujillo, Francisco Zevallos, Augusto García-Poma, Mariela Medina, Zoila Rodriguez-Bellido, Risto A Perich-Campos, César A Pastor-Asurza, María I Segami, Manuel F Ugarte-Gil
Objective In this paper, we aim to define factors associated with health-related quality of life (HRQoL) in Mestizo patients with systemic lupus erythematosus (SLE). Methods We evaluated patients with SLE from Peru's two largest hospitals between October 2012 and July 2015 to ascertain HRQoL. Using a standard protocol, we incorporated demographic characteristics, clinical manifestations and treatment in our analysis. HRQoL was measured with the LupusQoL, disease activity was ascertained with the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI), and damage was appraised with the Systemic Lupus International Collaborating Clinics (SLICC)/American College of Rheumatology (ACR) damage index (SDI)...
May 2018: Lupus
Ruth O'Riordan, Michele Doran, Deirdre Connolly
Background: Fatigue and Activity Management Education (FAME) is a six-week occupational therapy-led programme focusing on fatigue and stress management, exercise, nutrition, and joint protection. Each session consists of education and goal setting. Objectives of Study: To assess the impact of FAME on occupational participation and fatigue management. Methods: Three programmes were facilitated with twenty-one women with SLE. A mixed methods design was used...
2017: Occupational Therapy International
Ana-Belén Meseguer-Henarejos, Juan-José Gascón-Cánovas, José-Antonio López-Pina
The objective of this study was to test different exploratory solutions to the LupusQoL scale in a sample of Spanish patients with SLE using confirmatory factor analysis (CFA) and Rasch modeling, as well as to estimate the convergent validity. The χ 2 test, RMSEA, CFI, and TLI were used to test the fit of the different exploratory structures with CFA. To estimate the parameters in the dimensions found, a rating scale Rasch multidimensional random coefficient multinomial logit model was used. The reliability of the scores was obtained with coefficient alpha and coefficient omega...
August 2017: Clinical Rheumatology
Shanthini Kasturi, Jackie Szymonifka, Jayme C Burket, Jessica R Berman, Kyriakos A Kirou, Alana B Levine, Lisa R Sammaritano, Lisa A Mandl
OBJECTIVE: The aims of this study were to assess the construct validity and the test-retest reliability of Patient Reported Outcomes Measurement Information System (PROMIS) computerized adaptive tests (CAT) in patients with systemic lupus erythematosus (SLE). METHODS: Adults with SLE completed the Medical Outcomes Study Short Form-36, LupusQoL-US version ("legacy instruments"), and 14 selected PROMIS CAT. Using Spearman correlations, PROMIS CAT were compared with similar domains measured with legacy instruments...
July 2017: Journal of Rheumatology
M A Cosatti, S Muñoz, P Alba, C A Helling, S Roverano, J Sarano, S Malm-Green, M Danielsen, D Medina Bornachera, A Alvarez, A Eimon, G Pendón, M Mayer, J Marin, C Catoggio, C N Pisoni
Objective The aim of this study was to measure presenteeism (productivity impairment while the patient is at work) and the related risk factors in patients with systemic lupus erythematosus (SLE) from Argentina. Methods A total of 130 consecutive (1997 American College of Rheumatology (ACR) criteria) working patients with SLE were assessed using a standardized data collection form. Sociodemographic, disease and work-related variables were collected. The Work Productivity and Activity Impairment (WPAI) questionnaire was performed...
January 2018: Lupus
Stephanie G Nantes, Vibeke Strand, Jiandong Su, Zahi Touma
OBJECTIVE: The Medical Outcomes Study Short Form 36 (SF-36) and Lupus Quality of Life (LupusQoL) are health-related quality of life questionnaires used in systemic lupus erythematosus (SLE). We first determined the hypothesis-testing construct validity of the SF-36 and LupusQoL against disease activity in patients with active SLE and then compared the sensitivity to change of SF-36 and LupusQoL domains according to different definitions of minimum clinically important differences (MCIDs) for improvement and worsening in the current cohort...
January 2018: Arthritis Care & Research
Gabriela Hernández-Molina, Itzel González-Pérez, Carlos Pacheco-Molina, Antonio R Cabral
AIM: To evaluate health-related quality of life (HRQoL) in primary antiphospholipid syndrome (PAPS) and correlate it with a crude estimate of accrual organ damage, comorbidity (diabetes mellitus, hypertension and dyslipidemia) and treatment (oral anticoagulation, immunosuppressors and prednisone). METHODS: We assessed HRQoL with the Short-Form 36 (SF-36) and the Lupus Quality of Life instrument (LupusQoL) and the disease burden with a modified Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SLICC/ACR SDI)...
March 6, 2017: International Journal of Rheumatic Diseases
I Etchegaray-Morales, S Méndez-Martínez, C Jiménez-Hernández, C Mendoza-Pinto, N E Alonso-García, A Montiel-Jarquín, A López-Colombo, A García-Villaseñor, M H Cardiel, M García-Carrasco
INTRODUCTION: Health-related quality of life (HRQOL) is affected by numerous clinical variables, including disease activity, damage, fibromyalgia, depression and anxiety. However, these associations have not yet been described in Mexican patients with systemic lupus erythematosus (SLE). OBJECTIVE: To evaluate the relationship between disease activity, damage, depression and fibromyalgia and HRQOL measured by the LupusQoL-instrument in Mexican patients with SLE. METHODS: A cross-sectional study was conducted in women fulfilling the 1997 ACR classification criteria for SLE...
2017: PloS One
H Devilliers, C Bonithon-Kopp, M Jolly
Objective The lupus impact tracker (LIT) is a 10-item patient reported outcome tool to measure the impact of systemic lupus erythematosus or its treatment on patients' daily lives. Herein, we describe the responsiveness of the LIT and LupusQoL to changes in disease activity, using the systemic lupus erythematosus responder index (SRI). Methods A total of 325 adult systemic lupus erythematosus patients were enrolled in an observational, longitudinal, multicentre study, conducted across the USA and Canada. Data (demographics, LIT, LupusQoL, BILAG, SELENA-SLEDAI) were obtained three months apart...
April 2017: Lupus
M A Machado Escobar, M S Yacuzzi, R N Martinez, L González Lucero, V I Bellomio, M Santana, L Galindo, M M Mayer, J C Barreira, J Sarano, G Gomez, M V Collado, A Martinez, M C Orozco, G Betancur, F Dal Pra, A Sanchez, V Juarez, E V Lucero
OBJECTIVE: To determine reproducibility and validity of an Argentine version of the Lupus Quality of Life questionnaire (LupusQoL) and to determine cut-off values in the questionnaire. MATERIALS AND METHODS: One hundred and forty-seven systemic lupus erythematosus patients (American College of Rheumatology 1982/1997) were assessed from April 2014 to July 2014. Demographic and socioeconomic variables were collected, as well as SELENA/SLEDAI, Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index Score, comorbidities and treatment data...
December 2016: Lupus
Kathleen McElhone, Janice Abbott, Chris Sutton, Montana Mullen, Peter Lanyon, Anisur Rahman, Chee-Seng Yee, Mohammed Akil, Ian N Bruce, Yasmeen Ahmad, Caroline Gordon, Lee-Suan Teh
OBJECTIVE: As a health-related quality of life (HRQOL) measure, the LupusQoL is a reliable and valid measure for adults with systemic lupus erythematosus (SLE). This study evaluates the responsiveness and minimal important differences (MIDs) for the 8 LupusQoL domains. METHODS: Patients experiencing a flare were recruited from 9 UK centers. At each of the 10 monthly visits, HRQOL (LupusQoL, Short Form 36 health survey [SF-36]), global rating of change (GRC), and disease activity using the British Isles Lupus Assessment Group 2004 index were assessed...
October 2016: Arthritis Care & Research
Meenakshi Jolly, Mark Kosinski, Cindy P Garris, Alan K Oglesby
OBJECTIVE: To evaluate the reliability, validity, responsiveness, and utility of the Lupus Impact Tracker (LIT). METHODS: This was a prospective longitudinal study with 20 North American sites participating. Consenting patients completed the LIT, Medical Outcomes Study Short Form 36 (version 2), Patient Health Questionnaire 9 (PHQ-9), LupusQoL, and patient LIT feedback questionnaire. Rheumatologists completed the Safety of Estrogens in Lupus Erythematosus National Assessment (SELENA) version of the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI), Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index, and physician LIT feedback questionnaire...
June 2016: Arthritis & Rheumatology
Su-li Wang, Evelyn Hsieh, Li-an Zhu, Bin Wu, Liang-jing Lu
In a time of increasing economic constraints, it is crucial that health systems optimize their resource use to ensure that they generate the maximum possible health gain. Therefore, it is necessary for health interventions to be evaluated and compared across therapeutic boundaries. Undertaking such an evaluation a generic utility-based measure is required. But it remains uncertain whether the utility values obtained by direct or indirect methods are comparable and which approach is the most appropriate in Systemic Lupus Erythematosus (SLE) population...
2015: Scientific Reports
Sibel Yilmaz-Oner, Can Oner, Fatih Mert Dogukan, Toklong Filam Moses, Kubra Demir, Nazar Tekayev, Pamir Atagunduz, Serhan Tuglular, Haner Direskeneli
The LupusQoL is a disease-specific health-related quality of life (HRQoL) measure for patients with lupus. We conducted this study to compare the efficiency of LupusQoL-TR (validated Turkish version of the LupusQoL questionnaire) with the 36-item Short-Form Health Survey (SF-36), a generic quality of life (QoL) scale, in Turkish patients with lupus. Both questionnaires were conducted at a single visit to the clinic. Disease activity was measured with the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI)...
March 2016: Clinical Rheumatology
O N Pamuk, A M Onat, S Donmez, C Mengüs, B Kisacik
BACKGROUND: Systemic lupus erythematosus (SLE) patients have seriously impaired quality of life (QoL). In addition to activity and damage indices used in the past, tools to evaluate QoL in SLE have been developed in recent years. In this study, we test the validity of the Turkish version of the Lupus-QoL (LupusQoL-TR) score, and investigate its association with clinical findings and activity indices. METHODS: A total of 132 patients diagnosed with SLE according to ACR 1997 criteria were included...
July 2015: Lupus
Rachel Meacock, Mark Harrison, Kathleen McElhone, Janice Abbott, Sahena Haque, Ian Bruce, Lee-Suan Teh
PURPOSE: To derive a mapping algorithm to predict SF-6D utility scores from the non-preference-based LupusQoL and test the performance of the developed algorithm on a separate independent validation data set. METHOD: LupusQoL and SF-6D data were collected from 320 patients with systemic lupus erythematosus (SLE) attending routine rheumatology outpatient appointments at seven centres in the UK. Ordinary least squares (OLS) regression was used to estimate models of increasing complexity in order to predict individuals' SF-6D utility scores from their responses to the LupusQoL questionnaire...
July 2015: Quality of Life Research
Hervé Devilliers, Zahir Amoura, Jean-François Besancenot, Bernard Bonnotte, Jean-Louis Pasquali, Denis Wahl, Francois Maurier, Pierre Kaminsky, Jean-Loup Pennaforte, Nadine Magy-Bertrand, Laurent Arnaud, Christine Binquet, Francis Guillemin, Claire Bonithon-Kopp
OBJECTIVES: This study aimed to estimate the responsiveness to change of a generic [the 36-item Short Form Health Survey (SF-36)] and a specific health-related quality of life questionnaire [the Lupus Quality if Life questionnaire (LupusQoL)] according to SLE patients' self-reported changes in health status. METHODS: In a cohort of 185 SLE patients, quality of life (QoL) was measured three times at 3 month intervals by the LupusQoL and SF-36 questionnaires. Anchors for responsiveness were defined by patients' global assessment of disease impact according to changes in a visual analogue scale (VAS), a 7-point Likert scale and a 0-3 scale of five patient-reported symptoms...
May 2015: Rheumatology
Naeimehossadat Hosseini, Zahra Sayed Bonakdar, Ali Gholamrezaei, Leila Mirbagher
Objectives. We evaluated the psychometric properties of the Persian LupusQoL for the evaluation of quality of life in Iranian systemic lupus erythematosus (SLE) patients. Methods. The LupusQoL was translated to Persian language. Patients with SLE (n = 78) completed the LupusQoL and the Short-Form Health Survey (SF-36). Disease activity and cumulative disease damage were assessed with standard indices. The psychometric properties of the scale were evaluated. Results. The Cronbach's alpha was 0.97 for the total LupusQoL (above 0...
2014: International Journal of Rheumatology
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