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quality of life in systemic lupus erythematosus

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https://www.readbyqxmd.com/read/28089979/quality-of-care-for-systemic-lupus-erythematosus-mind-the-knowledge-gap
#1
Vera Golder, Eric F Morand, Alberta Y Hoi
Systemic lupus erythematosus (SLE) is a prototypical chronic multiorgan autoimmune disorder that can lead to significant burden of disease and loss of life expectancy. The disease burden is the result of a complex interplay between genetic, biologic, socioeconomic, and health system variables affecting the individual. Recent advances in biological understanding of SLE are yet to translate to transformative therapies, and genetic and socioeconomic variables are not readily amenable to intervention. In contrast, healthcare quality, a variable readily amenable to change, has been inadequately addressed in SLE, despite evidence in other chronic diseases that quality of care is strongly associated with patient outcomes...
January 15, 2017: Journal of Rheumatology
https://www.readbyqxmd.com/read/28059025/a-multi-group-confirmatory-factor-analyses-of-the-lupuspro-between-southern-california-and-filipino-samples-of-patients-with-systemic-lupus-erythematosus
#2
D R Azizoddin, R Olmstead, C Cost, M Jolly, J Ayeroff, G Racaza, L A Sumner, S Ormseth, M Weisman, P M Nicassio
Introduction Systemic lupus erythematosus (SLE) leads to a range of biopsychosocial health outcomes through an unpredictable and complex disease path. The LupusPRO is a comprehensive, self-report measure developed specifically for populations with SLE, which assesses both health-related quality of life and non-health related quality of life. Given its increasingly widespread use, additional research is needed to evaluate the psychometric integrity of the LupusPRO across diverse populations. The objectives of this study were to evaluate the performance of the LupusPRO in two divergent patient samples and the model fit between both samples...
January 1, 2017: Lupus
https://www.readbyqxmd.com/read/27992002/neuropsychiatric-lupus-in-clinical-practice
#3
Helena Alessi, Lívia Almeida Dutra, Pedro Braga, José Luiz Pedroso, Fabio F Toso, Cristiane Kayser, Orlando G P Barsottini
Systemic lupus erythematosus (SLE) is a chronic autoimmune disease involving multiple organs, characterized by the production of autoantibodies and the development of tissue injury. The etiology of SLE is partially known, involving multiple genetic and environmental factors. As many as 50% of patients with SLE have neurological involvement during the course of their disease. Neurological manifestations are associated with impaired quality of life, and high morbidity and mortality rates. Nineteen neuropsychiatric syndromes have been identified associated with SLE, and can be divided into central and peripheral manifestations...
December 2016: Arquivos de Neuro-psiquiatria
https://www.readbyqxmd.com/read/27988789/systematic-review-of-rheumatic-disease-phenotypes-and-outcomes-in-the-indigenous-populations-of-canada-the-usa-australia-and-new-zealand
#4
REVIEW
Kelle Hurd, Cheryl Barnabe
We performed a systematic review designed to characterize clinical phenotypes and outcomes in Indigenous populations with rheumatic disease to enhance the understanding of how rheumatic disease presents in Indigenous populations and allow for better projection of the healthcare needs of the communities affected. A systematic search was performed in medical (Medline, EMBASE, CINAHL), Indigenous and conference abstract databases (to June 2015). Search terms for Indigenous populations were combined with terms for inflammatory arthritis conditions, connective tissue disorders, crystal arthritis and osteoarthritis...
December 17, 2016: Rheumatology International
https://www.readbyqxmd.com/read/27971884/health-related-quality-of-life-in-patients-with-systemic-lupus-erythematosus-sle-a-spanish-study-based-on-patient-reports
#5
N Fernández-Llanio-Comella, A San-Martín-Álvarez, D Vivas-Consuelo, A Jordán-Alfonso, J A Román Ivorra, P Vela-Casasempere, M I Saurí-Ferrer
No abstract text is available yet for this article.
November 2016: Value in Health: the Journal of the International Society for Pharmacoeconomics and Outcomes Research
https://www.readbyqxmd.com/read/27958688/results-of-surgical-interventions-for-critical-limb-ischaemia-due-to-vasculitis-or-collagen-tissue-related-disease
#6
Kota Yamamoto, Katsuyuki Hoshina, Atsushi Akai, Toshihiko Isaji, Daisuke Akagi, Takuya Miyahara, Toshiaki Watanabe
BACKGROUND: In this study, we aimed to clarify both systemic and local prognosis after surgical interventions for critical limb ischaemia (CLI) due to vasculitis or connective tissue related disease, and to search for any risk factors that can worsen the prognosis. METHODS: One hundred and ninety three patients that underwent surgical interventions for CLI between 2005 and 2014 were followed up for a median of 2.7 years. The patients were grouped into a group with vasculitis or connective tissue related disease (V) or with atherosclerosis (control: C)...
December 13, 2016: International Angiology: a Journal of the International Union of Angiology
https://www.readbyqxmd.com/read/27927882/the-japanese-lupuspro-a-cross-cultural-validation-of-an-outcome-measure-for-lupus
#7
M Inoue, K Shiozawa, R Yoshihara, T Yamane, Y Shima, T Hirano, M Jolly, K Makimoto
OBJECTIVE: This study aimed to validate the Japanese version of the LupusPRO questionnaire for use with systemic lupus erythematosus patients. METHODS: Participants were 205 lupus patients recruited from three rheumatology centers in Japan. Demographic data were collected and quality of life was assessed using the LupusPRO and the Short Form Health Survey-12. Disease activity was evaluated by physicians using the Systemic Lupus Erythematosus Activity Index. Some participants completed questionnaires 10-14 days after the first survey...
December 6, 2016: Lupus
https://www.readbyqxmd.com/read/27884822/a-framework-for-remission-in-sle-consensus-findings-from-a-large-international-task-force-on-definitions-of-remission-in-sle-doris
#8
Ronald van Vollenhoven, Alexandre Voskuyl, George Bertsias, Cynthia Aranow, Martin Aringer, Laurent Arnaud, Anca Askanase, Petra Balážová, Eloisa Bonfa, Hendrika Bootsma, Dimitrios Boumpas, Ian Bruce, Ricard Cervera, Ann Clarke, Cindy Coney, Nathalie Costedoat-Chalumeau, László Czirják, Ronald Derksen, Andrea Doria, Thomas Dörner, Rebecca Fischer-Betz, Ruth Fritsch-Stork, Caroline Gordon, Winfried Graninger, Noémi Györi, Frédéric Houssiau, David Isenberg, Soren Jacobsen, David Jayne, Annegret Kuhn, Veronique Le Guern, Kirsten Lerstrøm, Roger Levy, Francinne Machado-Ribeiro, Xavier Mariette, Jamil Missaykeh, Eric Morand, Marta Mosca, Murat Inanc, Sandra Navarra, Irmgard Neumann, Marzena Olesinska, Michelle Petri, Anisur Rahman, Ole Petter Rekvig, Jozef Rovensky, Yehuda Shoenfeld, Josef Smolen, Angela Tincani, Murray Urowitz, Bernadette van Leeuw, Carlos Vasconcelos, Anne Voss, Victoria P Werth, Helena Zakharova, Asad Zoma, Matthias Schneider, Michael Ward
OBJECTIVES: Treat-to-target recommendations have identified 'remission' as a target in systemic lupus erythematosus (SLE), but recognise that there is no universally accepted definition for this. Therefore, we initiated a process to achieve consensus on potential definitions for remission in SLE. METHODS: An international task force of 60 specialists and patient representatives participated in preparatory exercises, a face-to-face meeting and follow-up electronic voting...
November 24, 2016: Annals of the Rheumatic Diseases
https://www.readbyqxmd.com/read/27848056/an-evaluation-of-health-related-quality-of-life-in-patients-with-systemic-lupus-erythematosus-using-promis-and-neuro-qol
#9
Jin-Shei Lai, Jennifer L Beaumont, Sally E Jensen, Karen Kaiser, David L Van Brunt, Amy H Kao, Shih-Yin Chen
Systemic lupus erythematosus (SLE) is a multi-organ chronic autoimmune disease that can negatively affect patients' health-related quality of life (HRQOL). This study evaluated HRQOL of SLE patients using questionnaires from the Patient-Reported Outcomes Measurement Information System (PROMIS) and Quality of Life in Neurological Disorders (Neuro-QoL). Individuals with SLE completed an online survey consisting of the PROMIS-29 health profile, PROMIS Psychosocial Illness Impact-Negative, and Neuro-QoL Applied Cognition...
November 15, 2016: Clinical Rheumatology
https://www.readbyqxmd.com/read/27837342/health-related-quality-of-life-and-utility-comparison-of-ankylosing-spondylitis-rheumatoid-arthritis-and-systemic-lupus-erythematosus-patients-in-taiwan
#10
Hsin-Hua Chen, Der-Yuan Chen, Yi-Ming Chen, Kuo-Lung Lai
The purpose of this study was to evaluate the health-related quality of life among patients with ankylosing spondylitis (AS), rheumatoid arthritis (RA), or systemic lupus erythematosus (SLE). This prospective, cross-sectional survey was conducted from September 1, 2008 to August 31, 2009. Patients answered questions with regard to demographics and disease characteristics and also completed generic (SF-36) and preference-based utility (SF-6D and EQ-5D) instruments. Multivariate analysis assessed the relationship of RA and SLE to AS with respect to the outcomes of the different health-related quality of life instruments...
November 12, 2016: Clinical Rheumatology
https://www.readbyqxmd.com/read/27747587/an-update-on-treatment-and-management-of-pediatric-systemic-lupus-erythematosus
#11
REVIEW
Amit Thakral, Marisa S Klein-Gitelman
Systemic lupus erythematosus (SLE) is a chronic multisystem autoimmune disorder in which 20 % of patients are diagnosed in childhood. Childhood-onset SLE is associated with higher morbidity and mortality than adult-onset SLE. The aims of disease management with early immunosuppression are to decrease disease activity and improve quality of life. A multidisciplinary approach is necessary due to the complexity of lupus in pediatric patients. It is important to provide patients with high quality of care and to instill ownership of their disease process from a young age to prepare them to manage this life-long illness...
December 2016: Rheumatology and Therapy
https://www.readbyqxmd.com/read/27733941/the-implication-of-tissue-doppler-echocardiography-and-cardiopulmonary-exercise-in-early-detection-of-cardiac-dysfunction-in-systemic-lupus-erythematosus-patients
#12
Basant M Elnady, Ayman Saeed Mohamed Abdelghafar, El Shazly Abdul Khalik, Mohammed Mesfer Algethami, A S Basiony, Mona Dhaif Allah Al-Otaibi, Maram Eidhah Al-Otaibi
OBJECTIVE: Systemic lupus erythematosus (SLE) can present limitations to exercise capacity and quality of life (QoL) because of various clinical conditions, such as pulmonary disease or heart disease. Tissue Doppler echocardiography (TDE) offers the promise of an objective measurement to quantify regional and global ventricular function through the assessment of myocardial velocity data. This study aimed to assess the intensity of left ventricular (LV) and right ventricular (RV) systolic and diastolic dysfunction in SLE patients by means of TDE and cardiopulmonary exercise (CPX) testing to determine their impact on QoL...
September 2016: European Journal of Rheumatology
https://www.readbyqxmd.com/read/27721978/patient-reported-outcome-measures-in-a-population-of-medically-indigent-patients-with-systemic-lupus-erythematosus-in-puerto-rico
#13
Diana V Rodríguez-Rivera, Yerania Rodríguez-Navedo, Mariely Nieves-Plaza, Luis M Vilá
OBJECTIVE: To determine patient-reported outcomes measures in indigent patients with systemic lupus erythematosus receiving their healthcare through the Puerto Rico government managed care system and compare these measures with non-indigent patients treated in a private fee-for-service setting. METHODS: A cross-sectional study was conducted in a cohort of 98 Puerto Ricans with systemic lupus erythematosus. Patients from the public group (n = 40) were treated in a university-based specialized systemic lupus erythematosus clinic and the private group (n = 58) in a community-based rheumatology practice...
2016: SAGE Open Medicine
https://www.readbyqxmd.com/read/27708976/the-clinical-significance-of-antiphospholipid-antibodies-in-systemic-lupus-erythematosus
#14
Ozan Ünlü, Stephane Zuily, Doruk Erkan
Antiphospholipid syndrome (APS) is the association of thrombosis and/or pregnancy morbidity with antiphospholipid antibodies (aPL). Thirty to forty percent of systemic lupus erythematosus (SLE) patients are tested positive for aPL, which may have an impact on the SLE presentation, management, and prognosis. Compared with SLE patients without aPL, those with aPL have a higher prevalence of thrombosis, pregnancy morbidity, valve disease, pulmonary hypertension, livedo reticularis, thrombocytopenia, hemolytic anemia, acute/chronic renal vascular lesions, and moderate/severe cognitive impairment; worse quality of life; and higher risk of organ damage...
June 2016: European Journal of Rheumatology
https://www.readbyqxmd.com/read/27701937/impact-of-cognitive-impairment-depression-disease-activity-and-disease-damage-on-quality-of-life-in-women-with-systemic-lupus-erythematosus
#15
J Calderón, P Flores, J M Aguirre, G Valdivia, O Padilla, I Barra, L Scoriels, S Herrera, A González, L Massardo
OBJECTIVES: To define the relative role of cognitive impairment, depression, disease activity, and disease damage in the decreased health-related quality of life (HRQoL) frequently observed in systemic lupus erythematosus (SLE) patients. METHOD: We studied 101 Chilean female SLE patients and applied the 12-item Medical Outcomes Study (MOS) Short Form Health Survey version 2 (SF-12v2) to assess HRQoL and the Cambridge Neuropsychological Test Automated Battery (CANTAB) to assess cognitive function...
October 5, 2016: Scandinavian Journal of Rheumatology
https://www.readbyqxmd.com/read/27697141/follicular-t-helper-cells-and-il-21-in-rheumatic-diseases
#16
Tue Kruse Rasmussen
Rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) are lifelong diseases with increased mortality and chronic pains. They are both characterized by immunological imbalances causing the immune system attack and destroy the bodies own tissues (called autoimmune disease). The best treatment, we are currently able to offer these patients, cause significant side-effects and can not prevent significant loss of quality of life. At the heart of the disease mechanisms in RA and SLE are subsets of immune cells called T and B cells...
October 2016: Danish Medical Journal
https://www.readbyqxmd.com/read/27689581/burden-of-lupus-on-work-issues-in-the-employment-of-individuals-with-lupus
#17
Neelam Agarwal, Vinod Kumar
BACKGROUND: Systemic lupus erythematosus (SLE) or Lupus is one of the leading causes of work disability in the United States, accounting for about 20% of the more than estimated 1.5 million Americans with a work disability. The symptoms of lupus can have a profound impact on the person's employment. Impacts of lupus are more pronounced among young and middle-adulthood. Studies have shown that loss in work hours cost the nation nearly $13 billion annually. The loss also impacts the individual's work, quality of life, self-management, and self-efficacy...
October 17, 2016: Work: a Journal of Prevention, Assessment, and Rehabilitation
https://www.readbyqxmd.com/read/27667489/-neuropsychiatric-systemic-lupus-erythematosus
#18
Yoshiya Tanaka
Central nervous system damage, a major organ manifestation of systemic lupus erythematosus (SLE), causes significant morbidity and mortality. Designating this condition as neuropsychiatric SLE (NPSLE), the American College of Rheumatology defines it as involving the central and peripheral nervous systems and being characterized by various manifestations including stroke, seizures, and psychosis. NPSLE treatment mainly seeks to reduce damage accrual. In patients with NPSLE, the use of high-dose corticosteroids is recommended in combination with immunosuppressants, such as mycophenolate mofetil and intravenous cyclophosphamide pulse therapy...
September 2016: Brain and Nerve, Shinkei Kenkyū No Shinpo
https://www.readbyqxmd.com/read/27661011/prevalence-and-clinical-significance-of-nonorgan-specific-antibodies-in-patients-with-autoimmune-thyroiditis-as-predictor-markers-for-rheumatic-diseases
#19
Basant M Elnady, Naglaa M Kamal, Raneyah H M Shaker, Amal F Soliman, Waleed A Hasan, Hamed A Alghamdi, Mohammed M Algethami, Mohamed Bilal Jajah
Autoimmune diseases are considered the 3rd leading cause of morbidity and mortality in the industrialized countries. Autoimmune thyroid diseases (ATDs) are associated with high prevalence of nonorgan-specific autoantibodies, such as antinuclear antibodies (ANA), antidouble-stranded deoxyribonucleic acid (anti-dsDNA), antiextractable-nuclear antigens (anti-ENAs), rheumatoid factor (RF), and anticyclic-citrullinated peptides (anti-CCP) whose clinical significance is unknown.We aimed to assess the prevalence of various nonorgan-specific autoantibodies in patients with ATD, and to investigate the possible association between these autoantibodies and occurrence of rheumatic diseases and, if these autoantibodies could be considered as predictor markers for autoimmune rheumatic diseases in the future...
September 2016: Medicine (Baltimore)
https://www.readbyqxmd.com/read/27651918/i-too-am-america-a-review-of-research-on-systemic-lupus-erythematosus-in-african-americans
#20
REVIEW
Edith M Williams, Larisa Bruner, Alyssa Adkins, Caroline Vrana, Ayaba Logan, Diane Kamen, James C Oates
Systemic lupus erythematosus (SLE) is a multi-organ autoimmune disorder that can cause significant morbidity and mortality. A large body of evidence has shown that African-Americans experience the disease more severely than other racial-ethnic groups. Relevant literature for the years 2000 to August 2015 were obtained from systematic searches of PubMed, Scopus, and the EBSCOHost platform that includes MEDLINE, CINAHL, etc. to evaluate research focused on SLE in African-Americans. Thirty-six of the 1502 articles were classified according to their level of evidence...
2016: Lupus Science & Medicine
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