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https://www.readbyqxmd.com/read/27587460/the-lupus-impact-tracker-is-responsive-to-changes-in-clinical-activity-measured-by-the-systemic-lupus-erythematosus-responder-index
#1
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
https://www.readbyqxmd.com/read/27444335/validation-of-an-argentine-version-of-lupus-quality-of-life-questionnaire
#2
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...
July 20, 2016: Lupus
https://www.readbyqxmd.com/read/26816223/sensitivity-to-change-and-minimal-important-differences-of-the-lupusqol-in-patients-with-systemic-lupus-erythematosus
#3
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
https://www.readbyqxmd.com/read/26814452/prospective-validation-of-the-lupus-impact-tracker-a-patient-completed-tool-for-clinical-practice-to-evaluate-the-impact-of-systemic-lupus-erythematosus
#4
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
https://www.readbyqxmd.com/read/26293686/comparative-assessment-of-different-health-utility-measures-in-systemic-lupus-erythematosus
#5
COMPARATIVE STUDY
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
https://www.readbyqxmd.com/read/25846834/health-related-quality-of-life-assessed-by-lupusqol-questionnaire-and-sf-36-in-turkish-patients-with-systemic-lupus-erythematosus
#6
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
https://www.readbyqxmd.com/read/25542903/validity-and-reliability-of-the-lupus-qol-index-in-turkish-systemic-lupus-erythematosus-patients
#7
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
https://www.readbyqxmd.com/read/25510215/mapping-the-disease-specific-lupusqol-to-the-sf-6d
#8
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
https://www.readbyqxmd.com/read/25361539/responsiveness-of-the-36-item-short-form-health-survey-and-the-lupus-quality-of-life-questionnaire-in-sle
#9
MULTICENTER STUDY
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
https://www.readbyqxmd.com/read/25313310/linguistic-validation-of-the-lupusqol-for-the-assessment-of-quality-of-life-in-iranian-patients-with-systemic-lupus-erythematosus
#10
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
https://www.readbyqxmd.com/read/25048687/patient-reported-outcome-measures-for-systemic-lupus-erythematosus-clinical-trials-a-review-of-content-validity-face-validity-and-psychometric-performance
#11
REVIEW
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
https://www.readbyqxmd.com/read/24910903/sleep-quality-in-women-with-systemic-lupus-erythematosus-contributing-factors-and-effects-on-health-related-quality-of-life
#12
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
https://www.readbyqxmd.com/read/24892282/construct-and-criterion-validity-of-the-euro-qol-5d-in-patients-with-systemic-lupus-erythematosus
#13
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
https://www.readbyqxmd.com/read/24569393/validation-of-a-disease-specific-health-related-quality-of-life-measure-in-adult-italian-patients-with-systemic-lupus-erythematosus-lupusqol-it
#14
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
https://www.readbyqxmd.com/read/24049101/the-substantial-burden-of-systemic-lupus-erythematosus-on-the-productivity-and-careers-of-patients-a-european-patient-driven-online-survey
#15
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
https://www.readbyqxmd.com/read/23717486/validity-of-lupusqol-china-for-the-assessment-of-health-related-quality-of-life-in-chinese-patients-with-systemic-lupus-erythematosus
#16
Su-Li Wang, Bin Wu, Lin Leng, Richard Bucala, Liang-Jing Lu
OBJECTIVES: To adapt and assess the validity and reliability of LupusQoL for use in Chinese patients with systemic lupus erythematosus (SLE). METHODS: Debriefing interviews of subjects with SLE guided the language modifications of the tool. The process of adaptation proceeded according to the guideline and pre-testing results of LupusQoL-China. 220 SLE patients completed LupusQoL-China and a generic preference-based measurement of health EuroQoL scale (EQ-5D), and 20 patients repeated them after 2 weeks...
2013: PloS One
https://www.readbyqxmd.com/read/23264550/comparison-of-the-psychometric-properties-of-health-related-quality-of-life-measures-used-in-adults-with-systemic-lupus-erythematosus-a-review-of-the-literature
#17
REVIEW
Madhura Castelino, Janice Abbott, Kathleen McElhone, Lee-Suan Teh
OBJECTIVE: A review of the literature was undertaken to evaluate the development and psychometric properties of health-related quality of life (HRQoL) measures used in adults with SLE. This information will help clinicians make an informed choice about the measures most appropriate for research and clinical practice. METHODS: Using the key words lupus and quality of life, full original papers in English were identified from six databases: OVID MEDLINE, EMBASE, Allied and Complementary Medicine, Psychinfo, Web of Science and Health and Psychosocial Instruments...
April 2013: Rheumatology
https://www.readbyqxmd.com/read/22875651/health-related-quality-of-life-in-mexican-women-with-systemic-lupus-erythematosus-a-descriptive-study-using-sf-36-and-lupusqol-c
#18
COMPARATIVE STUDY
M García-Carrasco, C Mendoza-Pinto, M H Cardiel, S Méndez-Martínez, A García-Villaseñor, C Jiménez-Hernández, N E Alonso-García, R Briones-Rojas, G Ramos-Álvarez, A López-Colombo
The LupusQoL© questionnaire is a disease-specific health related quality of life (HRQOL) instrument for adults with systemic lupus erythematosus (SLE). The Short Form-36 (SF-36) is a generic instrument that captures the physical, psychological, and social impact. We conducted a descriptive study of women aged ≥ 18 years attending our Lupus Clinic. HRQOL was assessed by applying the LupusQoL© and SF-36. Lupus activity was measured using the Mexican Systemic Lupus Erythematosus Disease Activity Index (Mex-SLEDAI) and chronic damage using the Systemic Lupus Collaborative Clinics Damage Index (SDI)...
October 2012: Lupus
https://www.readbyqxmd.com/read/22826305/lupusqol-fr-is-valid-to-assess-quality-of-life-in-patients-with-systemic-lupus-erythematosus
#19
MULTICENTER STUDY
Hervé Devilliers, Zahir Amoura, Jean-Francois Besancenot, Bernard Bonnotte, Jean-Louis Pasquali, Denis Wahl, Francois Maurier, Pierre Kaminsky, Jean-Loup Pennaforte, Nadine Magy-Bertrand, Laurent Arnaud, Christine Binquet, Francis Guillemin
OBJECTIVE: To cross-culturally adapt the LupusQoL into French, to test its measurement properties and to further investigate its domain structure. METHODS: The cultural adaptation process according to guidelines and pre-testing resulted in the LupusQoL-FR. SLE patients completed the LupusQoL-FR at baseline, 15 days, 3 months and 6 months. Validity was studied through content and construct validity (factorial and Rasch analysis for structural validity, Spearman's correlation and Mann-Whitney tests for external validity)...
October 2012: Rheumatology
https://www.readbyqxmd.com/read/22588761/health-related-quality-of-life-measurement-in-adult-systemic-lupus-erythematosus-lupus-quality-of-life-lupusqol-systemic-lupus-erythematosus-specific-quality-of-life-questionnaire-sleqol-and-systemic-lupus-erythematosus-quality-of-life-questionnaire-l-qol
#20
REVIEW
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