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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...
April 15, 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 1, 2017: Lupus
Stephanie G Nantes, Vibeke Strand, Jiandong Su, Zahi Touma
OBJECTIVES: Medical Outcomes Study Short-Form 36 (SF-36) and LupusQoL are Health-Related Quality-of-Life (HRQoL) questionnaires used in systemic lupus erythematosus (SLE). We determined the hypothesis testing construct validity of SF-36 and LupusQoL against disease activity in patients with active SLE and 2) compared the sensitivity to change of SF-36 and LupusQoL domains according to different definitions of Minimal Clinically Important Differences (MCID) for improvement and worsening in the current cohort...
March 20, 2017: 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...
September 1, 2016: 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
Laura Holloway, Louise Humphrey, Louise Heron, Claire Pilling, Helen Kitchen, Lise Højbjerre, Martin Strandberg-Larsen, Brian Bekker Hansen
BACKGROUND: Despite overall progress in treatment of autoimmune diseases, patients with systemic lupus erythematosus (SLE) experience many inflammatory symptoms representing an unmet medical need. This study aimed to create a conceptual model of the humanistic and economic burden of SLE, and review the patient-reported outcomes (PROs) used to measure such concepts in SLE clinical trials. METHODS: A conceptual model for SLE was developed from structured review of published articles from 2007 to August 2013 identified from literature databases (MEDLINE, EMBASE, PsycINFO, EconLit) plus other sources (PROLabels, FDA/EMA websites, Clinicaltrials...
2014: Health and Quality of Life Outcomes
Leila Mirbagher, Ali Gholamrezaei, Naeimeh Hosseini, Zahra Sayed Bonakdar
AIM: Sleep quality disturbances are common in patients with systemic lupus erythematosus (SLE). We evaluated sleep quality and its contributors in women with SLE. Also we evaluated the effects of sleep quality disturbance on patients' health-related quality of life (HRQoL). METHODS: Sleep quality was assessed in 77 women with SLE (age 36.5 ± 10.1 years) using the Pittsburgh Sleep Quality Index (PSQI). Disease activity and cumulative disease damage were assessed with standard indices...
March 2016: International Journal of Rheumatic Diseases
Su-li Wang, Bin Wu, Li-an Zhu, Lin Leng, Richard Bucala, Liang-jing Lu
OBJECTIVE: To investigate the construct and criterion validity of the Euro Qol-5D (EQ-5D), which allows quality-adjusted life-years to be calculated, in patients with systemic lupus erythematosus (SLE). METHODS: Consecutive SLE patients who had been followed at the Renji Hospital, School of Medicine, Shanghai Jiao Tong University were recruited. Cross-sectional correlations of the EQ-5D with equivalent domains in disease-specific health-related quality of life (HRQoL), LupusQol, Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) measures, the Systemic Lupus International Collaborating Clinics Damage Index (SDI), and patient characteristics were tested...
2014: PloS One
F Conti, C Perricone, G Reboldi, M Gawlicki, I Bartosiewicz, V A Pacucci, L Massaro, F Miranda, S Truglia, C Alessandri, F R Spinelli, L-S Teh, F Ceccarelli, G Valesini
OBJECTIVE: The objective of this paper is to assess the validity of a linguistically validated version of the Lupus Quality of Life (LupusQoL(©)) in Italian patients affected by systemic lupus erythematosus (SLE). METHODS: Consecutive SLE patients completed the Italian version of the LupusQoL(©) and the Short Form (SF)-36. Disease activity was evaluated by the SLE disease activity Index-2000 (SLEDAI-2 K), and chronic damage by the Systemic Lupus International Collaborating Clinics/American College Rheumatology (ACR) Damage Index score (SDI)...
July 2014: Lupus
Caroline Gordon, David Isenberg, Kirsten Lerstrøm, Yvonne Norton, Enkeleida Nikaï, Daphnee S Pushparajah, Matthias Schneider
OBJECTIVE: The objective of this study was to explore the burden of SLE and its effect on patients' lives. METHODS: The Lupus European Online (LEO) survey included patient-designed questions on demographics, SLE diagnosis, and the impact of SLE on careers. Three SLE-specific patient-reported outcome (PRO) questionnaires were also completed: the Lupus Quality of Life (LupusQoL), the Fatigue Severity Scale (FSS), and the Work Productivity and Activity Impairment (WPAI)-Lupus v2...
December 2013: Rheumatology
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