Standard of Care for Lipedema in the United States

美国脂肪水肿的护理标准

• 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
• 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

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.

美国脂肪水肿标准治疗（SOC美国脂肪水肿） 博士凯伦·赫布斯特已经为脂肪水肿患者工作了15年， 来自NHLBI的专家和患者参加了一次会议， 脂肪水肿的诊断和护理。脂肪水肿是一种常见而痛苦的脂肪疾病 主要发生在女性（ICD-10 E88.2）。没有正式的指导方针， 尽管1940年在马约诊所首次描述了美国患有脂肪水肿的女性。 来自西班牙、荷兰、英国和德国的脂肪水肿指南 发表了。与这些国家相比，美国的医疗保健并不相同， 种族和民族多样性、高肥胖率、大片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Renaissance 巴尔的摩海港酒店。这次会议就发生在脂肪疾病资源协会之前 （FDRS）会议在同一家酒店，2019年4月12日至14日。FDRS支持和教育患者 和医疗保健提供者。15名具有脂肪水肿、血管和整形专业知识的与会者 外科、物理医学和康复、医学、肥胖、静脉学、内分泌学和 物理和职业治疗将与病人代表在一个 研究和评价准则评估（AGREE II） 在会议之前，与会者将收到所有已发布的脂肪水肿 指南，关于脂肪水肿的开创性论文，以及来自医疗保健提供者的整理意见， 美国使用机构审查委员会批准的SOC问卷收集， 脂肪水肿。这些数据将在会议开始时由选定的与会者进行总结。 与会者组成小组讨论脂肪水肿的诊断指南， 确保脂肪水肿的早期发现和跟踪，以及脂肪水肿的治疗和支持; 然后他们会聚集在一起分享数据。第二天早上整理了会议的资料 将沿着作业一起讨论，以便在同行中发表共识论文， 在接下来的一年里，杂志。会议产生的共识文件将 为医疗保健提供者提供关于脂肪水肿的循证教育，并提供护理工具 在美国的病人。共识会议还将强调需要更多研究的领域。 在基础和临床水平上，特别是在血管疾病领域，需要采取措施。会议 将在会议后的几天内在FDRS会议上总结。

项目成果

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