lupus

狼疮
  • 文章类型: Journal Article
    亚洲人的系统性红斑狼疮(SLE)患病率高于白种人,肾脏和其他主要器官表现的频率较高,预后较差。由于获得医疗保健系统的机会有限,在亚太地区的许多地区,SLE的结果仍然不能令人满意,治疗依从性差和治疗不良反应。亚太风湿病学协会联盟(APLAR)SLE特殊兴趣小组最近发布了一套关于亚太地区SLE管理的共识建议声明。本文是对亚洲SLE患者非肾脏表现的患病率和治疗的系统文献检索(SLR)的补充。
    The prevalence of systemic lupus erythematosus (SLE) is higher in Asians than Caucasians, with higher frequency of renal and other major organ manifestations that carry a poorer prognosis. The outcome of SLE is still unsatisfactory in many parts of the Asia Pacific region due to limited access to healthcare systems, poor treatment adherence and adverse reactions to therapies. The Asia Pacific League of Associations for Rheumatology (APLAR) SLE special interest group has recently published a set of consensus recommendation statements for the management of SLE in the Asia Pacific region. The current article is a supplement of systematic literature search (SLR) to the prevalence and treatment of non-renal manifestations of SLE in Asian patients.
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  • 文章类型: Journal Article
    Systemic lupus erythematosus (SLE) is a more common autoimmune rheumatic disease in the Asia-Pacific region. The prognosis of SLE remains unsatisfactory in some Asian countries because of delayed diagnosis, limited access to medications, increased complications and issues of tolerability and adherence to treatment. The Asia-Pacific League of Associations for Rheumatology SLE special interest group has recently published a set of consensus recommendations on the management of SLE for specialists, family physicians, specialty nurses, and other healthcare professionals in the Asia-Pacific region. This article reports a systematic literature review of the infective complications of SLE in Asia and evidence for prevention of these infections by pre-emptive antimicrobial therapy and vaccination.
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  • 文章类型: Journal Article
    Due to the extreme heterogeneity of lupus and the lack of consensus among stakeholders, pharmaceutical and biotechnology companies have had limited success in developing treatments for lupus. For this reason, the Lupus Foundation of America (LFA), researchers at the Center for the Study of Drug Development at Tufts University School of Medicine (Tufts CSDD) and an advisory committee of 13 international lupus experts collaborated to launch the Addressing Lupus Pillars for Health Advancement (ALPHA) project.
    To inform the ALPHA project, 17 in-depth interviews among lupus experts and a global survey among lupus drug development and clinical care professionals was conducted to identify, characterize, and prioritize fundamental barriers and validate findings.
    The global survey received 127 responses from experts across 20 countries. Results of the in-depth interviews and the survey findings were consistent. Top barriers to developing new medical treatments for lupus included the lack of a clear definition of the disease with respondents identifying 30 autoimmune conditions that may be lupus-related; lack of predictive biomarkers; flaws in clinical trial designs; and a lack of reliable outcome measures.
    The study findings encourage drug development professionals to validate disease-specific measures and to identify if specific symptoms are caused by lupus. This original research also provides a methodology that can be applied to highly heterogenous diseases where low consensus on diagnosis and treatment exists among drug development and health professionals.
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  • 文章类型: Journal Article
    UNASSIGNED: Lupus is a complex, heterogeneous autoimmune disease that has yet to see significant progress towards more timely diagnosis, improved treatment options for short-term and long-term outcomes, and appropriate access to care. The Addressing Lupus Pillars for Health Advancement (ALPHA) project is the first step in establishing global consensus and developing concrete strategies to address the challenges limiting progress.
    UNASSIGNED: A Global Advisory Committee of 13 individuals guided the project and began barrier identification. Seventeen expert interviews were conducted to further characterise key barriers. Transcripts were analysed using Nvivo and a codebook was created containing a list of thematic \'nodes\' (topics) and their descriptions. Findings were used to develop a final survey instrument that was fielded to a diverse, international stakeholder audience to achieve broad consensus.
    UNASSIGNED: Expert interviews identified lupus heterogeneity as the primary barrier hindering advancement. Subsequent barriers were categorised into three areas: (1) Drug development. (2) Clinical care. (3) Access and value. The global survey received 127 completed responses from experts across 20 countries. Respondents identified barriers as high priority including the lack of biomarkers for clinical and drug development use, flawed clinical trial design, lack of access to clinicians familiar with lupus, and obstacles to effective management of lupus due to social determinants of care. Respondents also identified 30 autoimmune conditions that may be lupus-related based on overlapping features, shared autoantibodies and pathophysiology.
    UNASSIGNED: ALPHA is a comprehensive initiative to identify and prioritise the continuum of challenges facing people with lupus by engaging a global audience of lupus experts. It also explored views on lupus as a spectrum of related diseases. Conclusions from this effort provide a framework to generate actionable approaches to the identified high-priority barriers.
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  • 文章类型: Journal Article
    背景:患有自身免疫性风湿性疾病(ARDs)的妇女很难获得计划生育的信息和支持,怀孕,早期育儿需要一种系统的方法来优先考虑研究,以加快干预措施的开发和评估,以满足这一人群的复杂需求。方法:与外行和专业利益相关者(n=29)进行名义小组技术(NGT)练习。利益相关者通过提供现有证据为辩论做好了准备。利益相关者完成了三项任务,单独排名,并就研究重点达成共识:任务1-使用视觉时间表绘制挑战和服务;任务2-确定研究主题;任务3-按优先顺序对研究主题进行单独排名。排名练习的结果反馈给小组以进行评论。结果:任务1产生的主要主题是需要提供信息,多学科护理,社会和同伴支持。在任务2中,围绕解决任务1中确定的护理挑战和差距,确定了15个研究主题和58个子主题。在任务3中,就应给予最高优先的十个研究主题达成了共识。这些都是单独排名的,导致以下优先级顺序(从1-最高到10-最低):1.在护理路径的早期共享决策;2.孕前咨询;3.关于怀孕/母乳喂养期间药物使用的信息;4.个性化护理计划;5.对伴侣/家庭成员的支持;6.有关当地支持/疾病特定问题的信息;7.跨护理途径的共享决策;8.同行支持;9.护理方面的社会不平等,和;10。整体/替代疗法指南。结论:这种从多学科和非专业角度确定研究重点的系统方法表明,活动应侧重于开发和评估增加患者参与临床决策的干预措施。多学科护理模式,及时提供信息。
    Background:Women with autoimmune rheumatic diseases (ARDs) find it difficult to get information and support with family planning, pregnancy, and early parenting. A systematic approach to prioritising research is required to accelerate development and evaluation of interventions to meet the complex needs of this population.  Methods:A Nominal Group Technique (NGT) exercise was carried out with lay and professional stakeholders (n=29). Stakeholders were prepared for debate through presentation of available evidence. Stakeholders completed three tasks to develop, individually rank, and reach consensus on research priorities: Task 1 - mapping challenges and services using visual timelines; Task 2 - identifying research topics; Task 3 - individually ranking research topics in priority order. Results of the ranking exercise were fed back to the group for comment.   Results:The main themes emerging from Task 1 were the need for provision of information, multi-disciplinary care, and social and peer support. In Task 2, 15 research topics and 58 sub-topics were identified around addressing the challenges and gaps in care identified during Task 1.  In Task 3, a consensus was reached on the ten research topics that should be given the highest priority. These were individually ranked, resulting in the following order of priorities (from 1 - highest to 10 - lowest): 1. Shared decision-making early in the care pathway; 2. Pre-conception counseling; 3. Information about medication use during pregnancy/breastfeeding; 4. Personalised care planning; 5. Support for partners/family members; 6. Information about local support/disease specific issues; 7. Shared decision-making across the care pathway; 8. Peer-support; 9. Social inequalities in care, and; 10. Guidance on holistic/alternative therapies.    Conclusions:This systematic approach to identification of research priorities from a multi-disciplinary and lay perspective indicated that activities should focus on development and evaluation of interventions that increase patient involvement in clinical decision-making, multi-disciplinary models of care, and timely provision of information.
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  • 文章类型: Journal Article
    暂无摘要。
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  • 文章类型: Journal Article
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  • 文章类型: Journal Article
    目的:回顾有关孕产妇慢性疾病和妊娠损失的现有数据。
    方法:我们搜索了PubMed和Cochrane库,死产,胎儿宫内死亡,胎儿宫内死亡,本文的流产和每种孕产妇疾病。
    结果:抗磷脂抗体(抗心磷脂,抗β-2-糖蛋白,狼疮抗凝药)应在10WG经超声证实(B级)流产后进行测量,抗磷脂综合征应在随后的妊娠(A级)中联合使用阿司匹林和低分子量肝素治疗。我们不建议在妊娠早期流产(B级)或死产(C级)的情况下进行遗传性血栓形成的测试。血糖控制应该是妊娠前糖尿病妇女的目标,以限制妊娠丢失(A级)的风险,目标是孕前HbA1c<7%。妊娠期间应使用L-甲状腺素治疗明显和亚临床甲状腺功能低下症,以降低妊娠丢失的风险(A级)。TPOAb阳性的女性应在怀孕期间进行TSH浓度随访,如果他们发展为亚临床甲状腺功能减退症(B级),随后接受L-甲状腺素治疗。
    结论:大多数慢性孕产妇疾病的孕前管理,理想情况下,通过孕前多学科咨询,降低妊娠损失的风险。
    OBJECTIVE: To review the available data on maternal chronic diseases and pregnancy losses.
    METHODS: We searched PubMed and the Cochrane library with pregnancy loss, stillbirth, intrauterine fetal demise, intrauterine fetal death, miscarriage and each maternal diseases of this paper.
    RESULTS: Antiphospholipid antibodies (anticardiolipin, anti-beta-2-glycoprotein, lupus anticoagulant) should be measured in case of miscarriage after 10WG confirmed by ultrasound (grade B) and an antiphospholipid syndrome should be treated by a combination of aspirin and low-molecular-weight heparin during a subsequent pregnancy (grade A). We do not recommend testing for genetic thrombophilia in case of first trimester miscarriage (grade B) or stillbirth (grade C). Glycemic control should be a goal before pregnancy for women with pregestational diabetes to limit the risks of pregnancy loss (grade A) with a goal of prepregnancy HbA1c<7%. Overt and subclinical hypothyroidisms should be treated by L-thyroxin during pregnancy to reduce the risks of pregnancy loss (grade A). Women who are positive for TPOAb should have TSH concentrations follow-up during pregnancy and subsequently treated by L-thyroxin if they develop subclinical hypothyroidism (grade B).
    CONCLUSIONS: Prepregnancy management of most chronic maternal diseases, ideally through prepregnancy multidisciplinary counseling, reduces the risks of pregnancy loss.
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  • 文章类型: Journal Article
    Lupus nephritis (LN) is a common and important manifestation of systemic lupus erythematosus (SLE). Evidence suggests higher rates of lupus renal involvement in Asian populations, and maybe more severe nephritis, compared with other racial or ethnic groups. The management of LN has evolved considerably over the past three decades, based on observations from clinical studies that investigated different immunosuppressive agents including corticosteroids, cyclophosphamide, azathioprine, mycophenolic acid, calcineurin inhibitors and novel biologic therapies. This is accompanied by improvements in both the short-term treatment response rate and long-term renal function preservation. Treatment guidelines for LN have recently been issued by rheumatology and nephrology communities in U.S.A. and Europe. In view of the racial difference in disease manifestation and response to therapy, and the substantial disease burden in Asia, a panel of 15 nephrologists and rheumatologists from different Asian regions with extensive experience in lupus nephritis - the Steering Group for the Asian Lupus Nephritis Network (ALNN) - met and discussed the management of lupus nephritis in Asian patients. The group has also reviewed and deliberated on the recently published recommendations from other parts of the world. This manuscript summarizes the discussions by the group and presents consensus views on the clinical management and treatment of adult Asian patients with LN, taking into account both the available evidence and expert opinion in areas where evidence remains to be sought.
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  • 文章类型: Journal Article
    Lupus nephritis (LN) is a common and important manifestation of systemic lupus erythematosus (SLE). Evidence suggests higher rates of lupus renal involvement in Asian populations, and maybe more severe nephritis, compared with other racial or ethnic groups. The management of LN has evolved considerably over the past three decades, based on observations from clinical studies that investigated different immunosuppressive agents including corticosteroids, cyclophosphamide, azathioprine, mycophenolic acid, calcineurin inhibitors and novel biologic therapies. This is accompanied by improvements in both the short-term treatment response rate and long-term renal function preservation. Treatment guidelines for LN have recently been issued by rheumatology and nephrology communities in U.S.A. and Europe. In view of the racial difference in disease manifestation and response to therapy, and the substantial disease burden in Asia, a panel of 15 nephrologists and rheumatologists from different Asian regions with extensive experience in lupus nephritis - the Steering Group for the Asian Lupus Nephritis Network (ALNN) - met and discussed the management of lupus nephritis in Asian patients. The group has also reviewed and deliberated on the recently published recommendations from other parts of the world. This manuscript summarizes the discussions by the group and presents consensus views on the clinical management and treatment of adult Asian patients with LN, taking into account both the available evidence and expert opinion in areas where evidence remains to be sought.
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