Standard of Care for Lipedema in the United States

美国脂肪水肿的护理标准

基本信息

批准号：
9762399
负责人：
KAREN Louise HERBST
金额：
$ 0.3万
依托单位：
UNIVERSITY OF ARIZONA
依托单位国家：
美国
项目类别：
财政年份：
2019
资助国家：
美国
起止时间：
2019-04-01 至 2020-03-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9762399
关键词：
Area Baltimore Blood Vessels Blood capillaries Body Weight decreased Cardiovascular system Caring Clinic Clinical Comorbidity Consensus Country Data Diagnosis Disease Early Diagnosis Education Endocrine Endocrinology Ensure Environment Evaluation Exercise Exposure to Fatty acid glycerol esters Fibrosis Functional disorder Germany Goals Guidelines Health Personnel Healthcare Healthcare Systems Hyaluronic Acid Inflammation Institutional Review Boards International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10)Journals Life Style Liquid substance Literature Lymphatic Lymphatic Diseases Lymphatic vessel Lymphedema Manual Lymphatic Drainage Measures Medical Medicine Metabolic syndrome Methods Mission Modality Movement National Heart, Lung, and Blood Institute Nervous System Physiology Netherlands Obesity Occupational Therapy Occupations Outcome Pain Paper Patient Care Patient Representative Patients Peer Review Pharmaceutical Preparations Physical Medicine Physical therapy Plastic Surgeon Plastic Surgical Procedures Population Heterogeneity Proteins Publications Publishing Publishing Peer Reviews Quality of life Questionnaires Renaissance Research Research Support Resistance Resources Risk Seminal Shame Societies Spain Structure Supervision Swimming Sympathetic Nervous System Time Tissue Therapy Tissues Training United Kingdom United States Vascular Diseases Water Weight Woman Work bariatric surgery data sharing diet and exercise ethnic diversity evidence base exercise program follow-up healthcare community improved interstitial macrophage meetings psychologic racial diversity standard of care symposium tool

项目摘要

Standard of Care for Lipedema in the United States (SOC Lipedema US) Dr. Karen Herbst has worked with patients with lipedema for over 15 years and is seeking support from the NHLBI for a meeting gathering experts and patients to develop a consensus paper on the diagnosis and care of people with lipedema. Lipedema is a common and painful fat disorder occurring primarily in women (ICD-10 E88.2). There are no formal guidelines for the care of women with lipedema in the US despite being first described in 1940 at the Mayo clinic. Guidelines on lipedema from Spain, the Netherlands, the United Kingdom and Germany have been published. Healthcare is not the same in the US compared to these countries, with different racial and ethnic diversity, high obesity rates, a large land mass, and a different healthcare system. The SOC Lipedema US meeting will occur April 11-12, 2019 at the Renaissance Baltimore Harborplace Hotel. This meeting occurs just before the Fat Disorders Resource Society (FDRS) meeting in the same hotel, April 12-14, 2019. The FDRS supports and educates patients and healthcare providers. Fifteen attendees with expertise in lipedema, vascular and plastic surgery, physical medicine & rehabilitation, medicine, obesity, phlebology, endocrinology, and physical and occupational therapy will gather with patient representatives under the guidance of a parliamentarian using the Appraisal of Guidelines for Research and Evaluation (AGREE) II as a framework to develop the SOC. Prior to meeting, attendees will receive all published lipedema guidelines, seminal papers on lipedema, and collated opinions from healthcare providers across the US collected using an Institutional Review Board approved questionnaire on SOC for lipedema. These data will be summarized in the beginning of the meeting by select attendees. Attendees form groups to discuss guidelines for the diagnosis of lipedema, clinical measures to ensure early detection of lipedema and follow up, and treatment and support of lipedema; afterwards they will gather to share data. The following morning collated data from the meeting will be discussed along with assignments for a consensus paper to be published in a peer- reviewed journal within the following year. The consensus paper generated from the meeting will provide evidence-based education for healthcare providers on lipedema and provide tools for care of patients in the US. The consensus meeting will also highlight areas in which more research is needed on the basic and clinical levels, especially in the area of vascular disease. The meeting will be summarized at the FDRS conference in the days following the meeting.

美国脂肪水肿的护理标准（美国SOC Lipedema） Karen Herbst博士已经与脂质肿的患者合作了15年，并寻求支持从NHLBI参加聚会专家和患者的会议，以制定有关有关的共识论文诊断和护理脂肪充血的人。脂肪充血是一种常见疼痛的脂肪疾病主要发生在女性中（ICD-10 E88.2）。没有正式的指导方针尽管1940年在梅奥诊所首次描述了脂肪水肿的妇女。来自西班牙，荷兰，英国和德国的脂肪水肿指南已出版。与这些国家相比，美国的医疗保健不同种族和种族多样性，高肥胖率，大土地和不同的医疗保健系统。 SOC Lipedema US会议将于2019年4月11日至12日在文艺复兴时期举行巴尔的摩港口酒店。这次会议就在脂肪疾病资源协会之前发生（FDR）2019年4月12日至14日在同一家酒店开会。FDR支持并教育患者和医疗保健提供者。有15位与脂质肿，血管和塑料专业知识的与会者手术，物理医学与康复，医学，肥胖，流血病学，内分泌学和身体和职业疗法将在A的指导下与患者代表聚会议员使用对研究和评估指南的评估（同意）II作为发展SOC的框架。在开会之前，与会者将收到所有已发表的脂质肿指南，关于脂质肿的开创性论文以及整个医疗保健提供者的意见美国使用机构审查委员会批准了有关SOC的调查表脂质肿。这些数据将在会议开始时由选定的与会者汇总。与会者组成的小组讨论诊断脂质肿的准则，临床措施确保早日检测到脂质肿并随访，并治疗和支持脂肪；之后，他们将聚集以共享数据。第二天早晨，会议中整理了数据将讨论与要在同行中发表的共识论文的作业。次年审查期刊。会议产生的共识论文将为医疗保健提供者提供基于证据的教育，并提供护理工具美国的患者。共识会议还将重点介绍更多研究的领域在基本和临床水平上需要，尤其是在血管疾病领域。会议会议结束后的几天，将在FDRS会议上进行总结。

项目成果

期刊论文数量（1）

专著数量（0）

科研奖励数量（0）

会议论文数量（0）

专利数量（0）

Standard of care for lipedema in the United States.

DOI：
10.1177/02683555211015887
发表时间：
2021-12
期刊：
Phlebology
影响因子：
1.7
作者：
Herbst KL;Kahn LA;Iker E;Ehrlich C;Wright T;McHutchison L;Schwartz J;Sleigh M;Donahue PM;Lisson KH;Faris T;Miller J;Lontok E;Schwartz MS;Dean SM;Bartholomew JR;Armour P;Correa-Perez M;Pennings N;Wallace EL;Larson E
通讯作者：
Larson E