keyword
https://read.qxmd.com/read/34373232/validation-of-the-lupusqol-in-venezuela-a-specific-measurement-of-quality-of-life-in-patients-with-systemic-lupus-erythematosus
#21
JOURNAL ARTICLE
Fhabián S Carrión-Nessi, María V Marcano-Rojas, Diana C Freitas-DeNobrega, Sinibaldo R Romero Arocha, Allen W Antuarez-Magallanes, Yurilís J Fuentes-Silva
BACKGROUND AND OBJECTIVES: Traditionally, the health-related quality of life (HRQoL) of patients with systemic lupus erythematosus (SLE) has been assessed using instruments that neglect the specific characteristics of the disease. This study determines the validity of the Lupus Quality of Life (LupusQoL) questionnaire as a psychometrically stable instrument to measure the HRQoL of patients with SLE in Venezuela and establishes the cutoff points of the questionnaire for the Venezuelan population...
June 2022: Reumatología clinica
https://read.qxmd.com/read/34335825/association-of-traditional-chinese-medicine-body-constitution-and-health-related-quality-of-life-in-female-patients-with-systemic-lupus-erythematosus-a-cross-sectional-study
#22
JOURNAL ARTICLE
Ning-Sheng Lai, Ming-Chi Lu, Hsiu-Hua Chang, Hui-Chin Lo, Chia-Wen Hsu, Kuang-Yung Huang, Chien-Hsueh Tung, Bao-Bao Hsu, Cheng-Han Wu, Malcolm Koo
Background: Traditional Chinese medicine (TCM) body constitution has been studied in many diseases, but few have focused on systemic lupus erythematosus (SLE) and particularly their association with disease-specific quality of life (QoL). Therefore, the aim of this study was to investigate the association of TCM body constitution and QoL in female patients with SLE. Methods: A cross-sectional study was conducted on adult female patients with a clinician-confirmed diagnosis of SLE in a regional hospital in Taiwan...
2021: Evidence-based Complementary and Alternative Medicine: ECAM
https://read.qxmd.com/read/34244970/psychometric-analysis-from-embody1-and-2-clinical-trials-to-help-select-suitable-fatigue-pro-scales-for-future-systemic-lupus-erythematosus-studies
#23
JOURNAL ARTICLE
Sophie Cleanthous, Sabine Bongardt, Patrick Marquis, Christian Stach, Stefan Cano, Thomas Morel
INTRODUCTION: Fatigue is one of the most important symptoms reported by patients with systemic lupus erythematosus (SLE) and a key concept of interest in SLE clinical trials. Despite this, fatigue remains poorly understood and sub-optimally measured by existing patient-reported outcome (PRO) instruments and scales. Here, we psychometrically evaluated the measurement properties of three PRO scales that purport to measure fatigue, using data from two SLE clinical trials. METHODS: Data were pooled from two completed phase 3 SLE trials: EMBODY1 (NCT01262365) and EMBODY2 (NCT01261793)...
July 9, 2021: Rheumatology and Therapy
https://read.qxmd.com/read/34063379/a-comparison-of-the-correlation-of-systemic-lupus-erythematosus-disease-activity-index-2000-sledai-2k-and-systemic-lupus-erythematosus-disease-activity-score-sle-das-with-health-related-quality-of-life
#24
JOURNAL ARTICLE
Ning-Sheng Lai, Ming-Chi Lu, Hsiu-Hua Chang, Hui-Chin Lo, Chia-Wen Hsu, Kuang-Yung Huang, Chien-Hsueh Tung, Bao-Bao Hsu, Cheng-Han Wu, Malcolm Koo
BACKGROUND AND AIM: The aim of this study was to compare the correlation of a recently developed systemic lupus erythematosus disease activity score (SLE-DAS) with the SLE disease activity index 2000 (SLEDAI-2K) with the Lupus Quality of Life questionnaire (LupusQoL) in Taiwanese patients with SLE. METHODS: A cross-sectional study was conducted in a regional teaching hospital in Taiwan from April to August 2019. Adult patients with a clinician-confirmed diagnosis of SLE based on the 1997 American College of Rheumatology revised criteria or the 2012 Systemic Lupus International Collaborating Clinics Classification Criteria were recruited...
May 15, 2021: Journal of Clinical Medicine
https://read.qxmd.com/read/33931336/validation-of-the-lupusqol-in-venezuela-a-specific-measurement-of-quality-of-life-in-patients-with-systemic-lupus-erythematosus
#25
JOURNAL ARTICLE
Fhabián S Carrión-Nessi, María V Marcano-Rojas, Diana C Freitas-DeNobrega, Sinibaldo R Romero Arocha, Allen W Antuarez-Magallanes, Yurilís J Fuentes-Silva
BACKGROUND AND OBJECTIVES: Traditionally, the health-related quality of life (HRQoL) of patients with systemic lupus erythematosus (SLE) has been assessed using instruments that neglect the specific characteristics of the disease. This study determines the validity of the Lupus Quality of Life (LupusQoL) questionnaire as a psychometrically stable instrument to measure the HRQoL of patients with SLE in Venezuela and establishes the cutoff points of the questionnaire for the Venezuelan population...
April 27, 2021: Reumatología Clinica
https://read.qxmd.com/read/33687687/patient-reported-outcomes-from-a-phase-4-multicenter-randomized-double-blind-placebo-controlled-trial-of-repository-corticotropin-injection-acthar-%C3%A2-gel-for-persistently-active-systemic-lupus-erythematosus
#26
JOURNAL ARTICLE
Anca D Askanase, George J Wan, Mary P Panaccio, Enxu Zhao, Julie Zhu, Roman Bilyk, Richard A Furie
INTRODUCTION: We assessed patient-reported outcomes from a multicenter, randomized, double-blind, placebo-controlled study of repository corticotropin injection (RCI; Acthar® Gel) in patients with persistently active systemic lupus erythematosus (SLE) despite treatment with moderate-dose glucocorticoids. METHODS: The trial enrolled adults with active SLE and moderate-to-severe rash and/or arthritis despite use of stable glucocorticoids (7.5 mg/day to 30 mg/day prednisone equivalent), antimalarials, and nonsteroidal anti-inflammatory drugs for ≥ 4 weeks and/or immunosuppressants for ≥ 8 weeks before screening...
March 2021: Rheumatology and Therapy
https://read.qxmd.com/read/33547787/association-of-clinical-characteristics-disease-activity-and-health-related-quality-of-life-in-sle-patients-with-major-depressive-disorder
#27
JOURNAL ARTICLE
Konstantinos Parperis, Savvas Psarelis, Andreas Chatzittofis, Michalis Michaelides, Dimitra Nikiforou, Elpida Antoniade, Bikash Bhattarai
OBJECTIVE: To determine the contributing factors associated with major depressive disorder (MDD) in SLE patients and examine the association between disease-specific health-related quality of life [lupus quality of life (LupusQoL)] domains and MDD. METHODS: Depression was assessed by the patient health questionnaire (PHQ)-9, and scores ≥10 indicate MDD. Demographic data, LupusQoL domains, clinical and other features of the SLE patients were described and compared between MDD (PHQ-9 ≥10) and non-MDD (PHQ-9 <10) groups using χ2 tests for categorical variables and Wilcoxon rank sum tests for non-normal continuous variables...
November 3, 2021: Rheumatology
https://read.qxmd.com/read/33323011/joint-involvement-influences-quality-of-life-in-systemic-lupus-erythematosus-patients
#28
JOURNAL ARTICLE
Francesco Natalucci, Fulvia Ceccarelli, Enrica Cipriano, Carlo Perricone, Giulio Olivieri, Carmelo Pirone, Giuseppe Mettola, Simona Truglia, Francesca Romana Spinelli, Cristiano Alessandri, Fabrizio Conti
INTRODUCTION: Joint involvement represents the major determinant in quality of life (QoL)in Systemic Lupus Erhytematosus (SLE) patients. However, QoLhas been generally evaluated by non-specific questionnaires. We evaluated the relationship between SLE musculoskeletal manifestations and QoL, assessed by LupusQoL. METHODS: Patients with joint involvement (group A) were compared with those without this feature (group B). Disease activity was assessed by SLEDAI-2k in the whole population, while DAS28 and swollen to tender ratio were applied to assess joint activity...
March 2021: Lupus
https://read.qxmd.com/read/33190803/relationship-between-disease-activity-organ-damage-and-health-related-quality-of-life-in-patients-with-systemic-lupus-erythematosus-a-systemic-review-and-meta-analysis
#29
REVIEW
Yue Shi, Mucong Li, Lingshan Liu, Ziqian Wang, Yanhong Wang, Jiuliang Zhao, Qian Wang, Xinping Tian, Mengtao Li, Xiaofeng Zeng
OBJECTIVES: Systemic lupus erythematosus (SLE) is a common systemic autoimmune disease that may lead to considerable physical, psychological, and socioeconomical burden. In previous studies, inconsistent results were reported for the association of disease activity and organ damage with health-related quality of life (HRQoL). This paper aimed to explore the relationship between disease activity, organ damage, and HRQoL measured by SF-36, EQ-5D, LupusQoL, and LupusPRO and investigate whether the correlation is region-specific...
October 22, 2020: Autoimmunity Reviews
https://read.qxmd.com/read/33079070/health-related-quality-of-life-improvements-in-systemic-lupus-erythematosus-derived-from-a-digital-therapeutic-plus-tele-health-coaching-intervention-randomized-controlled-pilot-trial
#30
JOURNAL ARTICLE
Faiz Khan, Nora Granville, Raja Malkani, Yash Chathampally
BACKGROUND: Systemic lupus erythematosus (SLE), a systemic autoimmune disease with no known cure, remains poorly understood and patients suffer from many gaps in care. Recent work has suggested that dietary and other lifestyle factors play an important role in triggering and propagating SLE in some susceptible individuals. However, the magnitude of influence of these triggers, how to identify pertinent triggers in individual patients, and whether removing these triggers confers clinical benefit is unknown...
October 20, 2020: Journal of Medical Internet Research
https://read.qxmd.com/read/32741305/age-at-diagnosis-and-health-related-quality-of-life-are-associated-with-fatigue-in-systemic-lupus-erythematosus-patients-data-from-the-almenara-lupus-cohort
#31
JOURNAL ARTICLE
Claudia Elera-Fitzcarrald, Cristina Reátegui-Sokolova, Rocío V Gamboa-Cárdenas, Mariela Medina, Francisco Zevallos, Victor R Pimentel-Quiroz, Paola A Zeña-Huancas, César A Pastor-Asurza, Risto A Perich-Campos, Zoila J Rodríguez-Bellido, Graciela S Alarcón, Manuel F Ugarte-Gil
OBJECTIVE: To define the factors associated with fatigue in Mestizo patients with Systemic Lupus Erythematosus (SLE). METHODS: This is a cross-sectional study of SLE patients from a single center cohort. Visits were performed every six months. For these analyses, the first visit between October 2017 and December 2018 was included. Demographic and clinical characteristics as well as treatment were recorded at every visit. Fatigue was ascertained with the Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-FT), Health-Related Quality of Life (HRQoL) with the LupusQoL, disease activity with the Systemic Lupus Erythematosus Disease Activity Index -2 K (SLEDAI-2K), and damage with the Systemic Lupus International Collaborating Clinics (SLICC)/American College of Rheumatology damage index (SDI)...
October 2020: Lupus
https://read.qxmd.com/read/32591423/measurement-properties-of-selected-patient-reported-outcome-measures-for-use-in-randomised-controlled-trials-in-patients-with-systemic-lupus-erythematosus-a-systematic-review
#32
JOURNAL ARTICLE
Vibeke Strand, Lee S Simon, Alexa Simon Meara, Zahi Touma
OBJECTIVE: The heterogeneous multisystem manifestations of SLE include fatigue, pain, depression, sleep disturbance and cognitive dysfunction, and underscore the importance of a multidimensional approach when assessing health-related quality of life. The US Food and Drug Administration has emphasised the importance of patient-reported outcomes (PROs) for approval of new medications and Outcome Measures in Rheumatology has mandated demonstration of appropriate measurement properties of selected PRO instruments...
June 2020: Lupus Science & Medicine
https://read.qxmd.com/read/32430357/an-integrative-review-of-the-lupusqol%C3%A2-measure
#33
JOURNAL ARTICLE
Pamela Coombs Delis, Jacqueline Dowling
BACKGROUND AND PURPOSE: Systemic Lupus Erythematosus negatively affects health related quality of life (HRQOL). The purpose of this review is to synthesize and evaluate findings related to the psychometric properties of the LupusQoL© and its variations. METHODS: A search of CINAHL, PubMed, and Medline for the timeframe of 2007-2019 for English-language articles using any form of the LupusQoL© was completed. Thirtyfive studies were reviewed to determine psychometric soundness...
May 19, 2020: Journal of Nursing Measurement
https://read.qxmd.com/read/32270369/predictive-factors-of-quality-of-life-among-systemic-lupus-erythematosus-patients-in-thailand-a-web-based-cross-sectional-study
#34
JOURNAL ARTICLE
Nop T Ratanasiripong, Paul Ratanasiripong
PURPOSE: This study aimed to assess mental health status (depression, anxiety, and stress) and explore factors associated with the disease-specific quality of life among Systemic Lupus Erythematosus (SLE) patients in Thailand. METHODS: This cross-sectional study used an online convenience sampling of 650 SLE patients who were registered members of the Thailand SLE Club. The study survey comprised of demographic information, health history, Depression, Anxiety, Stress Scale (DASS), and Lupus Quality of Life Scale (LupusQoL)...
April 8, 2020: Quality of Life Research
https://read.qxmd.com/read/31958285/the-impact-of-upper-limb-exercise-on-function-daily-activities-and-quality-of-life-in-systemic-lupus-erythematosus-a-pilot-randomised-controlled-trial
#35
RANDOMIZED CONTROLLED TRIAL
Kyriaki Keramiotou, Christos Anagnostou, Evangelia Kataxaki, Antonios Galanos, Petros P Sfikakis, Maria G Tektonidou
OBJECTIVE: To assess the effect of upper limb exercise on hand function, daily activities performance and quality of life of patients with systemic lupus erythematosus (SLE). METHODS: We performed a pilot randomised, 24-week follow-up, unmasked controlled trial. Inclusion criteria were upper limb arthralgias, a Disabilities of Arm, Shoulder and Hand (DASH) questionnaire score >10 and a stable treatment over the past 3 months. Patients were randomly allocated in the routine care (control) or exercise group that received an individually tailored 30-min daily upper-limb exercise programme by a hand therapist for 12 weeks...
January 2020: RMD Open
https://read.qxmd.com/read/31895090/discrepant-perception-of-lupus-disease-activity-a-comparison-between-patients-and-physicians-disease-activity-scores
#36
JOURNAL ARTICLE
Claudia Elera-Fitzcarrald, Karen Vega, Rocío V Gamboa-Cárdenas, Katiuska Zúñiga, Mariela Medina, Victor Pimentel-Quiroz, César Pastor-Asurza, Risto Perich-Campos, Zoila Rodríguez Bellido, Russell Griffin, Cynthia Aranow, Graciela S Alarcón, Armando Calvo, Manuel F Ugarte-Gil
OBJECTIVE: The aim of this study was to compare patient and physician (MD) assessment of disease activity in systemic lupus erythematosus patients. METHODS: This cross-sectional study was conducted between August 2016 and December 2017 at 2 Peruvian hospitals. One group assessed disease activity using a visual analog scale (VAS, 0-100 mm) and the other one using a numerical rating scale (NRS, 0-4), before and after their MD's visit. MDs assessed it with the Mexican Systemic Lupus Erythematosus Disease Activity (Mex-SLEDAI) (0-32) and with the SLICC/ACR Damage Index (SDI) for damage...
December 31, 2019: Journal of Clinical Rheumatology: Practical Reports on Rheumatic & Musculoskeletal Diseases
https://read.qxmd.com/read/31858960/consideration-of-coping-strategies-for-patients-suffering-from-systemic-lupus-erythematosus-reflection-for-a-personalised-practice-of-patient-education
#37
JOURNAL ARTICLE
Méryem-Maud Farhat, Sandrine Morell-Dubois, Noémie Le Gouellec, David Launay, Hélène Maillard, Marie-Hélène Balquet, Raymond Azar, Thomas Quemeneur, Amale Boldron, Pierre Bataille, Marc Lambert, Aurélia Lanteri, Anne-Laure Buchdahl, Vincent Sobanski, Pierre-Yves Hatron, Eric Hachulla, Pierre Clerson
OBJECTIVES: Systemic lupus erythematosus (SLE) is a chronic autoimmune multi-organ disease with an unpredictable course. SLE causes functional disability, changes in body appearance, and psychological distress. When faced with SLE, patients have to implement coping strategies. Therefore, the aim of this study was to describe patients' coping strategies, consider the implications for a personalised practice of patient education and evaluate patients' adherence to HCQ treatment. METHODS: One hundred and fifty-eight SLE patients receiving hydroxychloroquine (HCQ) treatment entered a prospective, non-comparative, longitudinal study aimed at describing patients' coping strategies and evaluating their adherence to the HCQ regimen...
July 2020: Clinical and Experimental Rheumatology
https://read.qxmd.com/read/31620787/disease-specific-quality-of-life-following-a-flare-in-systemic-lupus-erythematosus-an-item-response-theory-analysis-of-the-french-equal-cohort
#38
JOURNAL ARTICLE
Marie Corneloup, François Maurier, Denis Wahl, Geraldine Muller, Olivier Aumaitre, Pascal Seve, Gilles Blaison, Jean-Loup Pennaforte, Thierry Martin, Nadine Magy-Bertrand, Sabine Berthier, Laurent Arnaud, Abderrahmane Bourredjem, Zahir Amoura, Hervé Devilliers
OBJECTIVE: To explore, at an item-level, the effect of disease activity (DA) on specific health-related quality of life (HRQoL) in SLE patients using an item response theory longitudinal model. METHODS: This prospective longitudinal multicentre French cohort EQUAL followed SLE patients over 2 years. Specific HRQoL according to LupusQoL and SLEQOL was collected every 3 months. DA according to SELENA-SLEDAI flare index (SFI) and revised SELENA-SLEDAI flare index (SFI-R) was evaluated every 6 months...
October 17, 2019: Rheumatology
https://read.qxmd.com/read/31199590/low-disease-activity-state-remission-predicts-a-better-health-related-quality-of-life-in-systemic-lupus-erythematosus-patients
#39
JOURNAL ARTICLE
Manuel F Ugarte-Gil, Rocío V Gamboa-Cárdenas, Cristina Reátegui-Sokolova, Mariela Medina-Chinchón, Francisco Zevallos, Claudia Elera-Fitzcarrald, Victor Pimentel-Quiroz, Jorge M Cucho-Venegas, Zoila Rodríguez-Bellido, César A Pastor-Asurza, Graciela S Alarcón, Risto Perich-Campos
OBJECTIVE: To determine if low disease activity state (LDAS)/Remission predicts a better health-related quality of life (HRQoL). METHODS: Systemic lupus erythematosus (SLE) patients from a single center with at least two visits were included. Visits were performed every six months. HRQoL was measured with the LupusQoL. Remission: a SLEDAI-2K=0, prednisone daily dose≤5mg/d and immunosuppressive drugs on maintenance dose. LDAS: a SLEDAI-2K≤4, prednisone daily dose≤7...
June 14, 2019: Arthritis Care & Research
https://read.qxmd.com/read/30167315/patient-reported-outcome-measures-for-use-in-clinical-trials-of-sle-a-review
#40
JOURNAL ARTICLE
Zara Izadi, Julie Gandrup, Patricia P Katz, Jinoos Yazdany
Inclusion of patient-reported outcomes is important in SLE clinical trials as they allow capture of the benefits of a proposed intervention in areas deemed pertinent by patients. We aimed to compare the measurement properties of health-related quality of life (HRQoL) measures used in adults with SLE and to evaluate their responsiveness to interventions in randomised controlled trials (RCTs). A systematic review was undertaken using full original papers in English identified from three databases: MEDLINE, EMBASE and PubMed...
2018: Lupus Science & Medicine
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